Trishamn, Lacey & Freyja
Since there are so many of us out here suffering from combo/interferon/HCV related ailments, we've taken all the advice we have gathered and put it all together in a simple guide in alphabetical order by ailment. We also try to explain (when and where we are able) why these sides are occurring (i.e.: plaguing us), and what has helped us and other people on treatment deal with these "mild, flu-like symptoms for a few weeks"-har har har!
The following is a list of possible side effects that you may experience on Interferon or Intron A and Ribavirin combination therapy. We have put down a long list of the most troubling symptoms. That does not mean that you will get any of them, and hopefully nobody will get all of them!
If you have any sides/remedies that we have not covered we may consider adding them on a case by case basis. In this way, we can help each other in ways that the drug companies and doctors can't. Also, for those of you not on treatment, some of these tips might help you also since many of the combo sides are also symptoms of the Hepatitis C infection itself.
We are not doctors (although we are intelligent women and Freyja [pronounced Fray-aa NOT Free-jaa] is a former pre-med student with 6 years under her belt), but merely patients like you just trying to find the best ways to get through the next 48 weeks with our bodies, families and sanity intact. We are not suggesting that you take our advice over any given by a physician, homeopath, nutritionist, or anyone with a medical degree. These are only suggestions given with the best of intentions, along with our own wicked, twisted brand of (drug induced) humor.
Lord knows, we need a laugh when we are on this stuff!
Aches: see Muscle Aches/Joint Pain
Acid Indigestion: see Digestive Problems
Alopecia: see Hair Loss
Alcohol: see "NO Alcohol"
Amenorrhea: see Menstrual Irregularities/Pain
The Ribavirin may cause Hemolytic Anemia in some people which may require a reduction in dosage or cessation of the Ribavirin itself. Here is what the CDC says about it, "Ribavirin can induce hemolytic anemia and can be problematic for patients with preexisting anemia, bone marrow suppression, or renal failure. In these patients, combination therapy should be avoided or attempts should be made to correct the anemia. Hemolytic anemia caused by ribavirin also can be life-threatening for patients with ischemic heart disease or cerebral vascular disease." For entire reference, see: http://www.hepnet.com/hepc/cdc98/clinical.html.
Here is a very good pilot study about how the use of antioxidants like Vitamin C and E may help with that: Do Antioxidants Ameliorate Ribavirin Related Anemia in HCV Patients. Here is a really good article about the study: Anti-Oxidant Vitamins Delay Ribavirin-Related Anemia in Patients on Combination Therapy. I take my Vitamin C in a liquid form mixed with juice. It's more bioavailable that way, tastier and it is one less pill I have to take.
Some doctors are using Epogen, Neupogen or Neumega to help increase white blood cell and platelet counts.
Appetite (lack thereof): see Weight Loss
Appetite (too much of one): see Jenny Craig ;-)
Try to maintain yourself. Get a haircut, bathe, wear clean clothes. You may not feel like doing it, but take the effort, it will make you feel better. Hopefully, you won't scare people when they look at you.
Chronic hepatitis C infection is also associated with many autoimmune diseases (where the body develops antibodies which attack parts of itself). For example, about one-tenth of people with chronic hepatitis C infection (more often in women and older people) have antibodies to the thyroid gland, one-half of whom may develop hypothyroidism (an under active thyroid gland).
Additionally, interferon therapy may cause hypothyroidism or hyperthyroidism
(an overactive thyroid gland) in about one-tenth of those treated. People with
hypothyroidism may suffer from fatigue, poor memory, weakness, constipation,
weight gain, muscle cramps, intolerance to cold, hoarse voice, coarse skin, and
brittle hair. Also, there is a chance that other autoimmune problems such as
lupus, rheumatoid arthritis, and heart problems may manifest themselves during
treatment. Please ask your doctor to test you for potential autoimmune
problems before beginning treatment.
People with hyperthyroidism may suffer from anxiety, insomnia, weakness, diarrhea, weight loss, intolerance to heat, velvet-like skin, and brittle nails. Hypothyroidism can be treated with thyroid hormone pills. Hyperthyroidism can be treated with pills that block thyroid hormone synthesis. If the thyroid gland dysfunction is from interferon treatment and is caught early, the thyroid gland will return to normal once interferon is stopped. see HEPV-L's HEPATITIS C FAQ v1.0 September 13, 1996, or http://www.flash.net/~twb/BACafe/faq.htm#2.4.0b for entire reference. Freyja, Lacey and Graphix all are suffering from hepatitis c or interferon induced thyroid problems. Here are some most excellent posts (read all of them to get the studies) that Freyja put together on that subject: http://my.webmd.com/roundtable_message/210057.
Please contact your doctor if you are experiencing any of these symptoms.
Awake (as in "why I am always #@**%..."): see Insomnia
Bad Breath: See Oral Hygiene, or go to your nearest dentist.
Bad Thoughts about doing Very Bad Things: See Psychosis or Depression before actually doing them!
ACCK! Iím Bald!: see Hair Loss
Barf, I'm gonna: see Nausea
It is very important that you practice birth control while you are on treatment, this applies to both males and females. The treatment can cause serious birth defects. If you are on the combo, the effects of the Ribavirin do not leave your system until 6 months after stopping treatment. If you are a young couple and thinking of starting a family, please discuss all options of treatment with your doctor. Or try abstinence, it's easy when you are on treatment! See X-rated for details.
Bleeding Gums: see Oral Hygiene
Forgetfulness, lack of coordination, inability to spell and complete sentences in mid conversation. Losing: keys, shopping cart, the car itself, lists, mind, pills, glasses of water, etc. Try to keep a sense of humor. Laugh at yourself. Your sanity and intelligence will come back A.T. (after treatment).
Make lists, lots of them, because you will lose most of them. Write everything down legibly, don't count on your memory to remember what it was.
Wal-Mart and K-Mart have some great pill cases, they hold a weeks worth and have individual days of the week containers that you can remove from their main tray. Lacey and Freyja do theirs every Sunday, they would never remember what or when they took their pills without them.
Interferon does have an effect on the neurotransmitters in our brain. Who knows what that Ribavirin is doing to it also. This is a biggie as far as sides go, the reason why many people on treatment can't function and continue to work.
I have misplaced and found my brain over and over with the help of my homeopath. Here is what I take, it really works for me. Please, go find your own homeopath and ask them what would work best for you, everyone's nutritional needs are different. Here is a link to the NIH's National Center for Complimentary & Alternative Medicine. Always check with your doctor before embarking on any homeopathic or vitamin regimen.
RNA by Standard Process (actual RNA made from yeast)-http//:www.standardprocess.com. This stuff really helped me my first 3 months with brain functioning, cognitive thinking. Helped to give me the concentration I needed during the day. Downsides: A bottle of 90 tabs was $18, lasted about 3-4 week (a little $$) and the effects tend not to drop-off gradually, but kind of abruptly. I supplemented it with DHA by Soloray (its an omega-3 fatty acid-found naturally in salmon and human breast milk-it is essential for proper brain functioning). It's very inexpensive, a bottle of 30 capsules was $9, you can get it anywhere. This combination seemed to work for me for about three months. Then, as is typical with most all vitamins and herbs, my body got used to them and the effects gradually wore off. see Vitamins or Herbs
Recently, I went back to my homeopath and he substituted the RNA/DHA with Neuroplex by Standard Process (please again, check all supplements with your doctor) and CoQ-10 (you can get it really cheap at Costco). If/when they stop working, I will go back to the RNA/DHA and rotate as often as necessary. At least I can still work and think somewhat on the treatment, that's really important to me.
Many doctors are prescribing Ritalin for brain fog. They are doing in on a case by case method since it may potentially be a hepatotoxin. People that are prescribed Ritalin for brain fog need to have their ALT's monitored carefully. Please talk to your doctor to see if you qualify. Here is a medical reference on it: http://www.mentalhealth.com/drug/p30-r03.html.
Do not take Gingko Biloba, it can have an effect on the blood viscosity and may impact your clotting time and blood work. Please ask your doctor before taking any herbs or medication.
Bruises: see Injection methods or Muscle/Joint Pain
Don't cook, or if you must, please use a timer. Burnt food is hard on your gums. See Brain Fog or Lacey's recipe for a Cereal Dinner under Fatigue.
I can't seem to handle it while on the combo, it makes me dizzy and pass out, others are also having the same problem. Here is the mother load of all caffeine sites at HealthCentral with articles compiled by Dr. Dean Adell-decide for yourself if that cuppa joe is really worth what it does to your body: http://home.snap.com/main/channel/item/0,4,-9064,00.html
Stay away from gasoline (be extra careful of gasoline spills on the hand or foot when pumping gas and the like-better yet, treat yourself to "Full-Service"), turpentine, furniture stripping solvents, toxins, cleaning fluids, perfume, deodorant, nail varnish, scented creams, incense, candle burning, smoke from cigarettes (second-hand or inhaled). Cromme's doctor said, "All chemicals that you either breath or touch are eventually processed in your liver, if you can smell it, your liver has to process it. If it touched your skin, the liver has to process it".
On the bright side, being sickly has its advantages. You get out of pumping gas, heavy cleaning and painting. If you paint for a living, use a mask and make sure the area is well ventilated. Luckily, in Oregon and New Jersey it is illegal to pump your own gas and you don't have to pay extra for it.
Meme's hepatologist at the Mayo clinic recently said that smoking is as harmful to your liver as alcohol! If you smoke and haven't started treatment, quit before starting treatment. Do not delay treatment to quit smoking i.e. to continue smoking longer. Treatment or no treatment, if you have Hepatitis C, STOP SMOKING NOW!
Chills: see Fevers
Whatever you do, don't get one! On the combo, we are not in a very good position to fight infection. Get your flu shot, try not to touch too many surfaces in public bathrooms (they are proven hotbeds for disease).
Hand washing is also very important as a preventative action. Hand to mouth and hand to eye infection are common methods of disease transmission. From common colds, to flu, to Hepatitis A.
Ask you dentist or medical supply store for a surgical mask if your WBC (white blood cell count) is very low or if you are extremely paranoid like Freyja. Try to stay away from sick people.
Constipation: see Water
Crying Crying boo hoo boo hoo: See Depression and hereís a (((BIG HUG))) for you!
Cuts wonít heal: see Skin Care or Infection
"Depression is merely anger without enthusiasm." Signs of depression may include, but are not limited to: apathy, anger, cognitive changes, irritability, and depression(?). Here is an Online Depression Screening Test to see if you are depressed: http://www.med.nyu.edu/Psych/screens/depres.html, take this test frequently during your treatment.
Realize that it's the medication not you (or your spouse, boss or kids) that is making you feel this way. Ask your doctor to put you on an antidepressant ASAP if you or people around you notice any behavior changes. It will take at least 3-6 weeks to feel better after taking the Prozac, Zoloft, Xanax or whatever your doctor prescribes. If you are having sexual dysfunction see X-Rated.
Many heppers that start antidepressants claim that their sides improve on the medication! Talk to other heppers about what is going on, call people, join a chat group, go to your support group. Do not isolate yourself from people - YOU ARE NOT ALONE!
I've been lucky, I have not been very depressed on treatment. At the beginning and occasionally, I tend to experience mood swings/road rage. I take Vitamin B6, it's a natural de-stressor, seems to help me cope with it. Some people swear by St. John's Wort. They have it in tea bags now.
Do not take St. John's Wort at the same time you start antidepressants. St. Johns Wort, and Tryptophane cause serotonin to be released. Thereby negatively reacting with the anti depressant class Selective Serotonin Reuptake Inhibitors (SSRI). A build up of serotonin, with blocked reuptake receptors can allow toxic levels of serotonin in system. This can result in what's called the Serotonin Syndrome. Chest pain, confusion, nausea. Can be fatal, and is serious.
Side Effect Diary:
It is important to keep your doctor informed as to what you are experiencing. If you are experiencing serious side effects, please keep them informed. Don't count on your memory (see Brain Fog) write down your sides as you are having them. Do it on a calendar that is laying around. When it's over, you can look back and remind yourself how far you have come.
Freyja keeps a spreadsheet listing her daily medication dosages and sides. Since she sees many specialists, she prints them out the night before an appointment, and highlights the information pertinent to the doctor she is seeing that day.
Diet: see Nutrition
Lot's of people complaining about the dreaded "D" word. Can't seem to find the mechanism of why this occurs in some people. Yogurt is our answer, make sure it has live cultures and contains Lactobacillus Acidophilus and Streptococcus Thermophilus cultures. These are naturally occurring digestive bacteria and they aid your body in the digestive process. If you don't like yogurt, you can get them in pill form at any health food store. Yogurt may help to re-balance the internal flora of the digestive tract.
If you are still experiencing Fecal Urgency, try eating things with a lot of fiber and incorporate some hard cheeses into your diet. A glass of eggnog at bedtime will do wonders to "bind you up"-plus it has lots of calories. Carob may help stop or slow diarrhea. Mix powdered carob with water and drink.
Also, Papaya digestive enzymes (they come in chewables) contain papain and also aid in the digestion of protein. Fresh pineapple, pineapple juice or peppermint tea is also good. Also see Nutrition for a complete reference on digestive enzymes and bacteria.
Try to limit your intake of heavy, fatty, fried or fast food while on treatment, you may end up with some intestinal distress.
Ribavirin is in a lactic acid (lactose) base, it can cause acid ingestion for some people. Try to take them with food.
Dizziness: also see Hearing/Ear Problems
If you experience dizziness or vertigo when moving from a laying to sitting, or sitting to standing position, try moving your eyes around the room for a few moments before getting up. Sounds weird, but it really does help. Freyja's Linda Blair impression seems to help her a lot with this side. Be sure to tell the physician in charge of your treatment; they may or may not decide to write you a prescription. It is extremely important that they are made aware of vertigo as it is considered "a significant side", whatever that means.
Go slowly, take it easy, don't rush around, be very careful-stay close to the floor if you can (no stiletto heels!). Try really hard not to fall down, it hurts. Here is an excellent post on dizziness by Graphix: Dizziness is next to Faintness
Don't you have enough floating around your system? Remember to ask your doctor about the safety of any and ALL types of drugs before you ingest them. This includes over the counter, prescriptions that are not your own and drugs of a recreational nature.
Oh, and don't be afraid to ask your doctor for pain, sleeping, depression or any other type of medication while you are on treatment. Do not try to tough it out, you want to stay on therapy and keep your sanity and good heath at the same time.
Dry mouth: See Oral Hygiene and drink some WATER.
Eyes don't see so good no more, or why am I changing my eyeglass prescription every month?: see Vision Problems
Eye rash on lids of eyes (a side from the Ribavirin): see Skin Care
Ear problems or What's that noise in my ears? Is that the phone?: see Hearing Problems (if hearing voices that are telling you to do Very Bad Things, please see Psychosis)
Exercise: see Fatigue
Lean on your family, talk to them, tell them what you are going through-they love you. They want to be there for you and help you but they don't know how to express it. Take them with you to your support group meetings so they can meet others in a care taking position and bond. Give your family/caretaker a copy of this guide. I know we can seem resentful and ungrateful of help and assistance, however, caretakers are very much appreciated and need to be told so.
Here is a link to Dr. Koop's site, they have a regularly scheduled "Caregivers" chat, only for caregivers. They need to go somewhere to complain about us: http://www.drkoop.com/community/chat/.
Seek family or marriage counseling to help deal with issues as necessary.
Pamper yourself. Let the house and yard go for a while. Only try to do the bare minimum. Take naps. Get a massage. Try to keep your sense of humor! Watch a stupid Mel Brooks movie. Lean on your family and friends, that's what they are there for. If at all possible, take off work for a couple of weeks at the beginning of treatment, if you need to, take some short-term disability or sick leave.
I feel better when I work out with weights on injection nights. Start out slow if you have not done this in a while. The more active people in my group at NIH seem to do better with the sides. Also, please do not try to do too much cardio training. The Ribavirin effects your RBC (red blood cell count), which means that there are less of them to carry oxygen. Try using BreathEaze nose strips if you feel you are getting winded, they help you with the windedness.
Just do what you can, and don't get discouraged if its not a lot. It's the more
you do, the more you CAN do and the BETTER you'll feel philosophy. Schering also
recommends to do some physical activity on the combo.
But please keep it reasonable, listen to your body, take plenty of time for yourself, rest when needed. If you are too tired to cook dinner for your family, serve them cereal. Try to keep a positive attitude.
Lacey's Recipe for an easy Cereal Dinner
Preheat oven to 350 (cause you are so cold all the time)
Go to cabinet, pull out several boxes for them to choose from (you should never scrimp when it comes to your family's nutrition!)
Place bowls on table
Send husband to grocery store for milk
Pour and enjoy!
(utensils are optional-if they want a spoon they can wash it themselves!)
Here is an article written by Melissa Palmer, M.D. about Fatigue: Fatigue Affecting People with Liver Disease
Fecal Urgency: see Digestive Problems
I Feel crappy the morning after injections: see Injection Timing
Remember, fevers are not bad things. They are part of your body's natural defense to fight infections. Your body raises it's internal temperature in order to make it inhospitable for the virus. Your immune system is more effective at higher body temperatures. Of course you don't want it to go over 102, ask your doctor what temperature is safe for you! Don't forget to write down low and high temperatures in your Side Effect Diary. Low temperatures can be indicative of thyroid problems. see Thyroid
The interferon is triggering your immune system into action and that's why you are getting a fever. If you have a high viral load at the beginning of treatment and the fevers are not awful, I would try to ride them out and let your body help rid itself of the virus. If you really can't stand it, take a Tylenol, regular strength, no more than 6 a day. Ok, this may be a controversial subject, but my doctors at NIH said it's ok in small amounts-with no alcohol. Freyja's doctor, Hugo Rosen at OHSU concurs, and Cromme's liver docs at Mayo, both in Rochester and in Scottsdale, advised her that the only OTC pain medication to be taken is Tylenol. It does not effect your blood chemistry.
Don't forget to wear lots of cotton layers (flannel is good), long underwear, sweat shirts. Sleep in heavy cotton socks for when you have to make a midnight (and 2, 4 and 6am) bathroom run. Have extra nightclothes at your bedside. If you become soaked in sweat, you can change quickly without waking up to find dry clothes and without getting chilled.
Get an electric blanket for your side of the bed so you don't drive your spouse crazy.
The First Shot - How bad is it? What you
can do to get ready:
Ok, so you have not started treatment yet and you are reading the guide so that you can have a general idea of what to expect, especially the first night, which is by far, the worst day (for some people). We call it the "freight train" because you feel like you just got hit by one. The feeling is actually similar to a super bad flu or a New Years Day hang-over from hell. Common sides may include: fever, chills, sweating, severe headache, muscle pain, nausea, vomiting, insomnia, dehydration and overall feeling like crap. Then again, some people don't have any of these symptoms and don't feel very bad on the first night at all. I hope you are one of those, but it's always better to play it safe and prepare as best you can.
The most important thing that you can do is to hydrate yourself before you take the first shot, drink plenty of water and fluids, especially the day of the shot. It may ease the sides and make it easier on your kidneys. see Water It's better for your system and you will hydrate yourself better if you drink sips of fluid throughout the day rather than drinking large amounts at once in gulps.
Dress warmly, even in the summertime. Have extra blankets by your bed in case you wake up chilled, extra clothes ready in case you soak them with sweat, a water bottle for when you are thirsty and some Tylenol for your headache and fever. Have a thermometer by your bed and if you temperature goes above 102 degrees for an extended period, call your doctor.
Don't plan on doing anything your first shot night except for staying in bed. I know of someone that took the shot, and then went to work. He was a long-distance trucker, needless to say, he regretted not being home in bed, especially on first shot night. If you live alone, plan on having a friend or family member stay the night so they can keep an eye on you.
Before retiring, take a regular strength Tylenol Nightime formula or a Tylenol and some Benadryl. The Tylenol will help with the aches and fever, the Benadryl will hopefully make you drowsy enough so that you will sleep through the worst of it.
First shot night was not fun, but it has gotten better. As I look back, I realize that the anticipation and waiting was worse than the actual shot itself. We hope that it's the same for you also.
Phlegm: see Phlegm
My Food tastes like crap!: see Weight Loss
Forgetfulness: see Brain Fog
Friendship: see Relationships
Gingivitis: see Oral Hygiene
In some people, the Ribavirin can increase uric acid levels in the blood causing gout. If you are predisposed to this condition, you may want to discuss this with your doctor. Make sure that they are checking your uric levels when they do your blood work. Here is some information about it:
General Information and Resource Guide: http://quiles.home.mindspring.com/aahs/gout/gout.htm
In Need Of A Gout Diet: http://www.he.net/~brumley/renal/dietmessages/843.html
Cut back on washing. Get a lint roller for your clothes-masking tape works also. Get a hat, a good haircut, a bald friend. Do not wash it down the shower drain like Lacey did, it clogs it. Do not stick it to the shower wall, gather it up, weigh it, and graph the results like Freyja did. If you have already done this see Depression. Get one of those hair catchers for your drain.
I canít say enough about how wonderful this stuff is! My hair has never been fluffier or shinier! It has thinned a bit since starting treatment (I can't guarantee you won't lose it), but you can't tell by looking at it, my hair looks fab! Lacey and Freyja say, "Trishamn's hair looks awesome!" I plan on using this stuff even after treatment is over, its the best darn shampoo and conditioning system I have ever used, and I've used them all.
Here are the ingredients from the shampoo so that you can see its not full of scary
sounding chemicals: water, aloe vera, extract of burdock, comfrey, quassia, buckthorn,
chaparral, cransebill, rosemary, sage, nettle, horsetail, chamomile, yarrow, jojoba,
hydrolyzed wheat protein, toccopherol, wheat amino acids, biotine, niacine, then except
for the Nioxin, it reads like regular shampoo (come on, you don't expect me to type
ALL the rest of that in, now do you?).
The shampoo is about $12 for a large bottle that has lasted 4 months, the same for the conditioner. They also have a "leave in treatment" to keep your hair from falling out, that one is $34 for a bottle that also last about 4 months. They also have a new ultra super system for people that are seriously losing their hair, I bought it in a kit with the shampoo and conditioner for about $40 (hey, what price do you put on great hair?). Get it from a salon or order it on the web (type Nioxin in and see what you get) or go to www.nioxin.com and read more about it.
If you notice some redness in your scalp area, do not be alarmed. The redness is caused by the capillary dilation, the Nioxin is supposed to increase scalp circulation in addition to removing the dihydrotestosterone residue from your scalp (a factor in male pattern baldness). It's usually the leave-in Bionutrient Treatment that causes the redness, so please be careful with it and don't spill it all over yourself. My hairdresser says that the slight redness is an indication that it is working and goes away after a few weeks (it did for me). If the redness continues or causes welts or anything, stop using the product, you may be allergic to it. Nioxin is usually a well tolerated product.
The Nioxin may take a while to work, so start using it every day at least a month before starting treatment. Most people notice that their hair seems to fall out in cycles, with larger amounts of fall-out about every three months. Keep using it and give it time to work, it may help stave off the next fall-out cycle, or not. Here's hoping!
Please note, Rogaine is not recommended for people on treatment, minoxidil may cause a drop in blood pressure, and the product may also cause dryness and irritation.
I also sleep on a satin pillow at night, cotton fibers can pull and knot your hair. It also saves your "do" for another day. Do not try to buy your pillow covers from Hecht's (or rather The Hecht Company-they don't have them). Here is a funny story of what I happened when I tried to buy them there: http://my.webmd.com/roundtable_message/168772 . Save yourself the embarrassment and buy them online.
Try not to wash your hair everyday or put in gels or lotions with alcohol in it. Itís rough on your hair and you probably want to keep it in your head, not all over your clothes and floor. If your hair becomes stringy and greasy on the second day, use a little talcum powder to absorb the excess oil, or buy some dry shampoo. Don't forget to brush all of it out, when Lacey was in high school, she forgot and still bears the scars from the experience. She still hears those snotty girls taunting her, "Ewww! Look a big clump of dandruff in her hair! Gross!" Hair dryers and curling irons can cause fragile hair to break contributing to hair thinning. On the bright side - less hair dries much faster!
Hair coloring/perming: Ok, so you have noticed that your hair has become straight as a pin on treatment, even your eyebrows stand straight out (you are beginning to feel like you are starting to resemble Leonid Breshnev), and you've also developed a case of "llama lashes". Do not get your hair permed! The process of putting your hair into those tiny rollers is very stressful to your hair and actually stretches it. The chemicals for perming and hair coloring also take their toll on your hair during this delicate time. They have shampoo now that curls your hair at the drug store, use non-alcoholic moose (squirrel works well also) or gel for volume. Aveeda and Matrix both have plant based semi-permanent hair dyes that work really well, please ask your hairdresser to order one if they don't have them in stock. Do not be what my hairdresser refers to as a "kitchen magician", be sure to see a professionally licensed beautician for hair treatments.
The good news I've heard is that when this is over, many people get their hair back thicker and fuller than it was before starting treatment.
I hate everyone!!!!: Please see Psychosis or Depression before they hate you back!
My head hurts!! or, "Will someone please remove this hatchet from my head?": see Headaches
Oh, aren't these fun! Sorry if you are reading this. You know now that you never really had a headache before until youíve had one of these babies. Here is what I found is really happening in there. You are actually suffering from a chemically (interferon) induced migraine! Isn't that special? Some people are genetically predisposed to get migraines (lucky us), and if you are, you may get them. The interferon disrupts the neurotransmission process which effects the serotonin uptake in your brain-just like how a migraine works!
Watch out for "triggers"-loud noises, bright lights, funky disco lighting (Freyja's significant other gave her a 2 day migraine by jokingly chasing her around with a strobe light), strong cooking odors, perfume and avoid them. Lacey likes to sleep in a dark room with a hot cloth on her head (with earplugs if the children are home). I put a flexible gel pack or a bag of frozen peas on my head, it really helps. Or you can just move into your basement and become a mushroom until it's over.
The good news (?) is that for most people they eventually do better, it took mine about 6 weeks to abate, and I only get them on occasion. The bad news is that for some, the pain is so bad, you need to add another painkiller to the list. Do not over medicate yourself with over the counter pain remedies!! Those really won't touch the pain anyway, and you could be harming your liver. Call your doctor, a prescribed medication will work better and do less damage to your liver. Use of too much ibuprofen with the Ribavirin could damage your stomach lining.
People on the board mention Fioracet a lot, some take Imitrex (there may be a possibility of an interaction of sumatriptan [Imitrex] with certain antidepressant and pain killers, please discuss this with your doctor), Neurontin, Vicodin, Ultram and Tylenol #3 w/Codeine have also been mentioned.
Here is a very good study that appeared in JAMA about how the combination of Acetaminophen, Aspirin, and Caffeine is effective for migraine relief: http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_279/no_16/jac80007.htm
Transdermal/Intranasal/Sublingual Delivery Methods: Graphix says to ask your doctor about the possibility and availability of receiving your pain medication (and other medications) in a skin patch or cream form. Transdermal absorption by-passes the "first pass" metabolism by the liver, unlike oral meds. The metabolism process in oral ingestion may be stressful to the liver. Absorption through the skin by-passes this first pass liver metabolism, and bio available product directly circulates in bloodstream where various target tissues can directly utilize it. Since first pass enzyme conversion (in ingestion) is not necessary, smaller doses may be used (a lot of product is lost with ingestion). The liver still reacts with the circulating product in the bloodstream, and facilitates various metabolic and waste elimination functions. Sublingual is when the medication is dissolved under the tongue. Lacey also says that intranasal delivery works in a similar manner. You can also get some medications in a suppository form, that's if you REALLY don't want to take more pills.
Please ask your doctor about which type or method of pain relief is good for you. also see Fevers or Muscle Pain
The pounding/ringing in your ears is called Tinnitus. Interferon is a known audiotoxin and tinnitus is a side effect of interferon treatment. Here are some references about it:
Side Effects of Interferon Alpha in Viral Hepatitis: http://www.hepnet.com/nih/dusheiko.html.
Here is an FAQ about tinnitus itself: http://www.cccd.edu/faq/tinnitus.html.
Try "masking" the sounds by playing between stations on your radio "white noise", wear ear plugs everywhere you go-smile and nod a lot when people talk to you.
The interferon can also cause some people to have an Earache. The interferon may affect the fluid balance in your inner ear which can have an effect your equilibrium. Please see Dizziness. If you have an Earache, Meme suggests that you turn on your blow dryer to warm and blow it into your ear. Keep your fingers by your ear so that you can tell when it gets too warm.
Some people have reported some loss of hearing while on interferon therapy, this unfortunately may not be a reversible side effect, but some type are reversible when therapy is discontinued. If you notice hearing loss while on treatment, please notify your doctor so they can refer you to a specialist for an evaluation.
Heart pain or murmurs:
What are you doing reading this! Call your doctor ASAP!!
Please do your research or better yet, see a professional Nutritional Doctor or Homeopath if you plan to take ANY herbs. Do not take advice from a store clerk unless they have professional training, many of them work on commission. Some herbs can be contraindicated for the liver or may react badly to certain medications (see St. John's Wort under Depression).
People that are sick in the first place have less "reserves" to bounce back from an allergic or toxic reaction. Run all supplements by your primary doctor before ingesting them. Here is an excellent unbiased and informative article by Nathan M. Bass, MD, PhD: "Is There Any Use for Nontraditional or Alternative Therapies in Patients with Chronic Liver disease?"
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The Ribavirin is known to exacerbate the outbreak of the herpes simplex virus for people that have the virus. L-lysine taken at the onset of an outbreak may help prevent and/or lessen the severity of an outbreak. Here is a good link about how it works: http://www.gen.com/solutions/30days/oct16.htm, or see the Cold Sore reference under Oral Care. Denavir also works well on facial/lip outbreaks.
If you are experiencing a severe outbreak, please talk to your doctor about prescribing something for it. Remember, a herpes virus prodrome and the sore itself is an actual wound and there is and increased possibility of transmission of not only the herpes virus, but also the HCV virus itself.
It is very important to go to the doctor if you develop an infection or sore that will not heal. I myself limped around for 5 weeks with an infected ingrown toe nail that would not heal. The doctor told me that I should have come sooner, he gave me an oral antibiotic and extra strength antibacterial cream and my toe has healed in only 2 days. Small infections that your body would otherwise be able to handle before treatment can potentially develop into more serious complications. Take extra care of yourself during this time. Also see Skin Care
Here is the Amgen site for their interferon call Infergen. A very helpful site, they plan to include a support group locator in the near future. www.infergen.com
This is something that you are going to have to figure out for yourself depending upon your schedule and particular reactions. You are NOT bound to a M,W,F, give yourself your shot at bedtime schedule. Please consult with the physician overseeing your treatment before changing your schedule. This is especially important if you are in a clinical trial.
The typical dosage of interferon is usually given 3 times per week, but you need to figure out what will work for you and stick with it. I am on a T, Th, Sat- that means my best days of the week are Mon & Tues so I can start the work week out productively. I take my shots at 4 in the afternoon, sides (chills, fever aches) hit at 10pm. I found that when I took it later at night, I would be dragging around the office the next day until lunchtime. Now, I sleep through the worst of it, and wake up feeling fine. I also noticed that the Interferon gives me a little buzz, so rather than try to sleep with it, I take it early in the day and then go to the gym.
It does get easier, we can do it traveling down the freeway with one hand on the wheel (please do not attempt this feat on your own-remember we are professionals;-). Use a bag of frozen peas to numb the area, then wipe the alcohol pad over the area (not the other way around). Do not blow on the area, your mouth has germs.
Costco and Wal-Mart have inexpensive syringes at $10.00 for 100. At NIH (and with your kit) we get a 27 gauge. You can get 29 gauge allergy needles at those stores, they don't hurt as bad. Also Microfine IV 29's work well. In Maryland, Oregon and Virginia we don't need a prescription. Please check with your own state regulations.
Don't forget to draw back and check for a vein, if there is blood, throw it away. Do not use it, really. If you notice any extreme redness (the injection site may become slightly red), signs of infection (tenderness, puss, swelling, cracking, gray areas, excessive bleeding and/or bruising), please notify your doctor ASAP!
A nurse suggested to inject the interferon with the beveled edge of the needle facing up toward the surface of your skin at a 45 degree angle. That way it does not force the interferon down, into the soft tissue. It works! I get less bruising by doing it that way. I also let my interferon sit at room temp for 10-15 minutes before I inject (or gently roll it between your hands for a few minutes), otherwise it stings going in when it's cold. Do not drop or shake your interferon! If this happens, put it back into the refrigerator (for later use) and use a fresh one.
Injection site map: It's a good idea to keep track of where you are injecting and to rotate your sites every time. You should not inject in the same spot within a 7 week period. Here is a site map that will help you keep track: http://www.hepnet.com/inject.html.
Disposal and Handling of syringes: Proper syringe handling, and disposal is important enough to mention. It is a potential method of transmission. Family members sometimes assist, or are interested with injections, and therefore can place themselves within range of a needle stick accident. If a family member takes care of injection tasks they should NOT replace the cap on the needle. They should just drop the syringe, needle first into the sharps container.
Ask your doctor for a sharps container or put it in a glass container and take it back to your doctorís office for proper disposal.
I still occasionally suffer through a sleepless night, or I pop awake for no reason at 4am. A regular strength Tylenol PM (see Headache, Fevers, or Muscle Pain) or Benadryl works really well for me, but they can also be quite drying to your sinuses. I've heard that eating a banana at bedtime as a sleep aid (will also help with leg cramps) also works well. I take my shots early in the day (4:00 p.m.) and I take my Ribavirin in the am and at lunchtime. See Injection Timing for further details. I have found that the farther away from bedtime that I take these drugs, the better I sleep. Some people on the board also take Melatonin. Please check all medications with your doctor.
If people start to mistake you for Don Knotts, talk to your doctor, some
people are taking Ambien for the insomnia.
When all else fails, you can pretend itís Thanksgiving and roast yourself up a Butterball and pass out drooling on the couch while watching Sports Center.
Iron: see Vitamins
Itching, or "who dropped the ants in my pants?": see Skin Care
no real reason for it to be here, I just happen to like it.
Joint Pain: see Muscle Aches/Joint Pain
Ketosis: see Nutrition
Eat more bananas, they are high in magnesium and potassium and help some people with them (itís worked for me). Try microwave heating pads. I've heard that Cal Trate500 works miracles for leg cramps. Some people swear by Grape Seed Extract, it's a natural antioxidant and assists with the circulatory system.
As a last resort, call your doctor regarding amputation of the offending leg if none of those work. ;-)
"You know, this stuff ain't no lemonade" A good quote from a fellow hepper's doctor about the combo.
Libido: see X-Rated
Lip Care: see Oral Hygiene
UPPER RIGHT QUADRANT (URQ) PAIN (SIDE PAIN):
Even though the liver itself contains no nerve endings, and does not feel pain, many people with HCV experience pain in the upper right side of their body, just beneath the ribs. This is thought by some to be "referred pain" from the swelling of the liver capsule due to the disease process. This pain may also be referred to the right shoulder or to the back between the shoulder blades. See http://www.flash.net/~twb/BACafe/faq.htm#2.2.2b for entire reference.
Many people also experience "liver pain" during treatment. Do not panic! This seems to be a common complaint and is not necessarily an indication that the treatment is or is not working. Please write down any pain you experience in your Side Effect Diary and notify your doctor, especially if the pain is persistent or especially severe.
The Liver and what does it do: see Nutrition
Lugers: see Mucus
Many women are complaining that the combo disrupts their normal menses cycles. Irregularity, spotting, heavy flow, light flow, no flow, extreme cramping are not uncommon symptoms while on treatment. Do not overmedicate yourself with over the counter pain killers. Dispose of your feminine hygiene products in plastic bags, well away from the reach of the family dog.
Menstrual irregularities are more common in women with Hepatitis C. See your doctor if the cramping is too severe.
Mood Swings: see Depression
Mouth sores: see Oral Hygiene
Yup, it's there - don't really know why or what causes it. Carry lots of Kleenex and do a phlegm check of your clothing before leaving the house. Having blood in your nose mucus is snot uncommon if you are on Combo. Severe bleeding needs to be reported. See Bloody Nose under Oral Hygiene.
Hacking up yellow or green phlegm can be indicative of a bacterial infection or smoking. Either way see your doctor! Especially if you are a smoker. see Chemicals
My doctor suggested that I try an over-the-counter expectorant (without alcohol) to help bring up the mucus.
Muscle Aches/Joint Pain:
Doctors at NIH (Hoofnagle and Seeff) recommend Tylenol not Advil. Tylenol is safe in small amounts and does not effect your blood work or chemistry, do not take more than 6 regular strength per day. Rosen at OHSU concurs, and Cromme's liver docs at Mayo, both in Rochester and in Scottsdale, advised her that the only OTC pain medication to be taken is Tylenol. It does not effect your blood chemistry. also see Headache and Fevers
Use a microwaveable or electric heating pad. Buy several and bury yourself under them to keep warm. They have electric mattress pads for your bed and they can help relieve some of the muscle aches. Also, your family pet will love you if you get one.
Move slowly, don't strain yourself. Take it easy, exercise, do some stretching exercises like yoga, but don't overdo.
A hot or cold rag on the back of your neck feels good. Try to take a dry sauna, soak for a bit in a hot tub (not for an extended period, remember the chlorine!), or get a massage. Some people drink Aloe Vera for aches and pains, it naturally occurring anti-inflammatory - please do not inject it!
Iíve been rubbing Arnica Gel on my muscles and
joints. I get one made by Boiron, you can purchase it at
most health food stores, Fresh Fields or Whole Foods. Arnica has been used for
centuries by the American Indians, it's natural and really seems to help with
joint pain. It also helps bruises fade more quickly. Here is a
link about it, you can get it at any health store-They also have it in
sublingual (under the tongue) form. Please do not ingest it without doctor
supervision, large amounts could be toxic!
Here is a site with info about it: http://www.go-symmetry.com/arnica.htm
Here is a place on the web where you can order it: http://www.vitaminchannel.com/manf/BoironHomeopathics.htm
Many people are taking Glucosamine and Chondroitin sulfate for joint pain. These supplements may help your body repair its damaged or weakened cartilage by assisting your body's own natural repair mechanisms. There are no known negative side effects with them. Please ask your doctor before taking any nutritional supplement.
Here is some information about them: http://www.go-symmetry.com/glucosamine.htm & http://www.go-symmetry.com/chondroitin.htm
Also see Headache reference for more about pain medications.
Move slowly, do not attempt to read in moving vehicles, you will become green. Eat small nutritious meals. Drink plenty of fluids to aid digestion. Eat foods that will help settle your stomach: crackers, oatmeal, broths, ginger ale (its also good with cranberry juice), peppermints, candied ginger, herb teas, yogurt with granola. Wendela says that Solaray GingerTrips are good for nausea, they are chewable, tasty and they work instantly! You can get them at any health food store, a bottle of 60 is about $6.
Use pressure points travel sickness wrist bands (Sea-bands). They really work.
Some people swear by acupuncture to relieve their nausea. If it gets really bad, ask your doctor for something, you don't want to lose too much weight at once, its not good for you. If you are truly desperate, SharRN said to ask your doctor about Compazine suppositories, so if you are really tired of taking pills, this may be the way to go. see Weight Loss or Nutrition
If you are experiencing dizziness, see Dizziness.
Not allowed! Surround yourself with positive people, go to your support group! You will feel better if you are social and doing something positive. Bring your family and friends to support group meetings with you so they can better understand what you are going through. also see Family
NO NO NO, Especially not ever while on treatment. Why are you even asking? What are you thinking??? One ounce of alcohol negates the effects of the interferon for how ever long it takes your body to process it. Negates=makes it not work at all!
That means that if you decide to "celebrate" even just a little) your "undetected" status (especially over a long weekend) that would mean that by the time your body processes the alcohol you drank, up to 4 days may have passed (technically) since you had your shot. 4 DAYS!!! Plenty of time to allow a breakthrough of the virus. Is it worth it? Go have a fruit juice or something, just say NO!
Here are some very scary articles about it if you don't believe us: The interaction of alcoholic liver disease and hepatitis C, (Hepatogastroenterology 1998 Mar-Apr;45(20):331-9); The alcohol-altered liver membrane antibody and hepatitis C virus infection in the progression of alcoholic liver disease, (Hepatology 1993 Jan;17(1):9-13)
Many over-the-counter products contain alcohol. Please read the labels before you take anything. Alcohol in any amount is NOT good, especially for people with compensated livers, whatever you may hear.
Nose Problems (or did you catch the number of the bus that hit me?): see Oral Hygiene (nose mouth and throat) or Mucus
I think that this is one of the best posts about hep c and nutrition: http://my.webmd.com/roundtable_message/120233. I stopped my coffee intake (it seems to react very badly with combo, see Caffeine), and no alcohol of course. A good suggestion is to cut down on your animal protein intake. Protein produces more ammonia in your blood, which your liver has to process again into urea. This process makes your liver work harder. Also, too much protein can put your body into Ketosis, a potentially serious condition. When you have a lot of ammonia in your blood, your blood becomes more acidic, your body responds by pulling calcium from your bones in order to normalize the pH levels in your blood. See Osteoporosis for more information.
Try to eat as much organic produce as you can (those pesticides are hard on the liver), and just eat healthy. Also, try to limit your fat intake, especially fried or greasy foods; it can be hard on your digestive system.
Here is a very good site that explains liver function in the body: "The Liver: Master Organ for Optimal Nutrition" http://www.tiac.net/users/birdlady/theliv~1.html
Ouch! those shots hurt!: see Injection Methods
Oral Hygiene (nose, mouth and throat):
This is a doozy of a combination side to get. The interferon dehydrates you and also slows wound healing. When your mouth is very dry, the combination of the dryness and bacteria can run amok and cause all kinds of dental problems including periodontal disease, receding gums, mouth sores, bad breath, gingivitis, cracked molars and loose fillings. Be careful with what you eat so that you don't injure your gums. Stay away from sharp or crunchy foods that can tear your delicate skin. Gargling with very warm strong salt water, Goldenseal or Chamomile tea may be a beneficial aid in mouth wound healing. Don't forget to spit!
Homeopathic: There are many natural products at the market these days, I use "Eco Dent Ultimate Essential Mouth Care-Natural daily rinse & oral wound cleaner", it is available at Whole Foods or Fresh Fields. Here is a list of the ingredients: Fortified with Echinacea, Goldenseal and CoQ-10, baking soda, Menthol, Peppermint oil, Castor bean oil, Tea tree oil, oils of orange, lemon, sweet fennel, Anise, Geranium, bergamot, Fougere, lavender, rosemary, basil and rose.
Oxygene is also a very good antibacterial rinse http://www.essenceofthings.com/OxyfreshOralHealthCare.htm.
Over the counter: Another good product is called Biotene. It helps provide mouth moisture they make a rinse, toothpaste and sugarless gum. If your local pharmacy does not carry it, call them and ask them to order it. No prescription is necessary.
Prescription: I ran the gamut on the dry mouth deal, was really bothering me, disrupting my quality of life. Did not realize how much I missed spit. I had my dentist prescribe Salagen. Here is a link to the press release on it: http://www.pslgroup.com/dg/5b68e.htm . Out of all the pills I take, I really like this one, my mouth fills with spit within 15 minutes. of taking it-and it is such a tiny pill, no bigger than a tic-tac. Drs. Hoofnagle and Ghany at NIH OK'd it for me, so I'm pretty sure it's ok for us.
Reasons to take Salagen by Freyja:
1) Itz weally hald ta twalk wiff yer tongue sduck tew da roove of yer
2) Really helps with the dry throat and sore throat sides!
3) It makes consuming food sources much more pleasant.
4) Your breath is less stinky with more spit in your mouth.
5) Makes you feel much more normal. You really won't know how much you
miss spit until you get it back.
We actually didn't remember how to deal with normal saliva flow. Be careful not to start taking Salagen right before you have to make an important presentation, or be in a situation in which drooling is not socially acceptable. I guess you could get away with it if you said "You can see how excited *drool* I am about this project!" Good places to go when you first regain your saliva include a good restaurant, a playboy or Chippendale type place, whatever, your preference might be. ;-) Truthfully, Salagen is wonderful stuff and doesnít make you drool all over yourself.
I also had my dentist prescribe an ultraflouridated toothpaste to use for the next year to keep the bacteria at bay: Colgate PreviDent (Rx-by prescription)-1.1percent Sodium Fluoride gel. They also have a rinse. I alternate it with the Biotene toothpaste.
Dental work- Either do it before starting combo or wait until you are done. Your mouth wounds will take 3 times longer to heal. Freyja had four non-emergency root canals within 24 hours; her gums never healed properly after the hours of rubber dam clamp torture. If you must get root canals, get one at a time. And see if they can perform it in several visits with minimal use of rubber dams. If you do get a cleaning, tell the dental hygienist to be very careful not to create any gum injury. Brush and floss carefully and frequently.
These tasks can be daunting if sides are bad, but persevere and you may avoid having to deal with more severe problems.
Lip care: Use lip gloss, Chapstick, "Lip Food" or an ointment with L-lysine (see the following link for details: http://www.gen.com/solutions/30days/oct16.htm or see Herpes Outbreaks) for dry chapped lips or cold sores. If you get persistent sores at the corner(s) of your lips try putting an antifungal on them for a few days before bed. Try to get one that is for oral use or have your doctor give you a sample of Lotrisone cream, it is made by Schering.
Sore throat: This is a side from either the Ribavirin or the interferon. Try sucking on some cough drops or try a non-alcohol spray. A mild herb tea with honey and lemon is soothing. Try not to yell at your children too often, it will only make it worse. see Family
Mouth Thrush/Yeast: The human body is an incredibly complex entity, when you are on interferon, your body is told that the a number one task is to fight viral infections. Unfortunately this leaves you open to bacterial and fungal infections and may create imbalances with the "friendly" bacteria in your body. A common manifestation of this imbalance may include mouth thrush or yeast infections in your mouth or genital areas.
SharRN recommends that if you notice your tongue becoming inflamed/sore and or notice a white coat on your tongue you may want to ask your doctor about the need for MYCELEX TROCHE. This is a suck and swallow medication to eliminate yeast/thrush of the mouth. She said that it actually tastes decent. Takes several days to have a real impact on the thrush. If you are unable to tolerate swallowing the medication due to Nausea, you may want to try first brushing your teeth with clear water (no toothpaste), and perhaps using a unit to scrape your tongue lightly and then swishing and spitting out the med Obviously not as effective as swallowing but it may give you some relief.
If you develop a yeast infection in another delicate area, please confirm that you are truly experiencing one and get a confirmation from your gynecologist, especially if the over the counter medicine has no effect. There are many over the counter medications available to deal with those nasty yeasties. If you are having a yeast infection, any of them should work.
Also, you can eat live yogurt to re-balance the internal flora of the digestive tract and try to avoid sugar and whole milk. Yeast thrives in glucose. also see Digestive Problems
Sinus Problems: The combo can irritate your mucous membranes. Go to an ear nose and throat specialist. Make sure that you don't have a sinus infection, if you do ask for a medication in a spray form (unless you want another pill, that is).
Bloody nose: Unless you are losing pints of blood, not to worry, but please tell your doctor about it. Please dispose of your used tissues properly, carry around baggies for used ones. also see Mucus
Stuffy nose: Vicks Vapor Rub or breathe steam from a tea kettle with a towel over your head. Please try to remember to turn the burner off, or you may catch the towel on fire. It can happen to you. Lacey did it, she is still looking for her eyebrows.
Many people have reported cases of osteoporosis or a loss in bone density as a possible side effect from treatment, or possibly from the HCV itself. Here are some interesting articles about it: Osteoporosis and bone mineral metabolism disorders & Osteodystrophy in patients with chronic hepatitis and liver cirrhosis.
Please ask your doctor about monitoring your bone density, and possibly prescribing a calcium supplement for you while you are on treatment, especially if you are female. Ask your doctor whether Viactiv calcium supplements are right for you, they taste just like Kraft Caramels, get them at your local pharmacy. Do NOT eat the whole box at one sitting, if you already have, see Digestive Problems.
Weight bearing exercise has also shown to be helpful in reducing bone loss. Please discuss all exercise regimens with your doctor. Improper nutrition can also adversely affect your bone density. Also see Ketosis reference under Nutrition.
Yes, I have to all the time, morning, noon and night. All that water you are drinking needs to go somewhere. Your body gets used to the increased water intake after the first two months or so. You will eventually make it through an entire night without several bathroom runs. Really.
It is important to keep your urinary tract in good operating health, remember the interferon is excreted through your kidneys. It's very important that you drink plenty of water or cranberry juice to keep your fluid levels up. Some folks say that Dandelion tea is good for your urinary health (don't forget to ask your doc first!).
Also, a kidney infection can be very dangerous while on treatment, some people have experienced kidney failure on interferon! Please notify your doctor if you are experiencing any kidney or urinary pain. also see Water
Pain Killers: see Headache or Muscle Pain
Phlegm: see Mucus
People on treatment that have tried to get a tan have instead received a really awful burn and Riba-rash in its place. This burn can be quite serious and take quite a long time to heal. It is imperative that you try to stay out of the sun while on treatment. Get the highest sunscreen available (I know someone that got "lobsterized" using a 30spf!), and apply it liberally and often. Please take our word on this one and avoid the experience for yourself! also see Skin Care
Pregnancy: see Birth Control
No, you are not crazy. It's the medication. Talk to your doctor, have him refer you to a professional therapist. Ask for anti-psychotic drugs. Here is a website that discusses the signs that you are suffering from psychosis: http://www.healthanswers.com/database/ami/converted/001553.html
Queasy, I'm feeling: see Nausea
Find time for yourself, get a massage, work on a hobby, get some ear plugs if you have small children or teenagers.
Rage in general (hey! and I have not even
Here is a good article to show to your loved ones and employers (See! I told you it was not me, my liver made me do it!) Toxins from a diseased liver may trigger feelings of rage and anger. Do not take it out on the clerk at Kinko's, your in-laws, boss, co-worker, children, other people's children, the grocery clerk, people that bump into you accidentally or happen to just be crossing your path. See Depression if you become unbearable.
Rashes, rashes everywhere: see Skin Care
Red spots at injection sites: see Skin Care or Injection Methods
Rebetron© (aka "the Combo"):
No, this is not a new type of Transformer toy that your child must have for Christmas, we only wish it cost as much as one! A year's treatment of Rebetron is almost equal to the purchase of a minivan, hopefully your insurance will cover most of it. If you require financial resources or assistance, please check out Kathy's Hepatitis C Information Page at: http://pages.hotbot.com/health/kdreyer/. Here is the Rebetron official home page: www.rebetron.com. If you would like to talk to a nurse about your symptoms, patients that are on Rebetron can sign-up for counseling through the Be-In-Charge program. Go to www.beincharge.com for information on how to sign up.
Try to use this time as an opportunity to meet others and make new friends, either in support group or on the Boards. Right now, we are all going through this together, and friendships with other heppers can offer you the support and understanding that we need right now. When you find friends that you can connect with, it makes all the difference in world to your mental outlook.
Taking your Ribavirin or "How do I open
these *#@!% blister packs??":
If you are in a study, you are fortunate in that you will probably get your Ribavirin already "freed" from their little plastic "sarcophagi" in large white bottles. Otherwise, you will probably get them in these hand-dandy, impossible to open blister pack things that will not open unless a blow-torch is applied to them. I have never encountered a more stubborn blister pack in my life, you'd think that it was a shoplifting protection device! Whatever you do, don't use your teeth to open the packs, you may damage your gums! see Oral Care
Graphix opens his Ribavirin by cutting one edge with a pair of scissors and then peeling the foil back and popping out the capsules. Or, if you have children and they misbehave, you can always threaten them with "Ribavirin packet opening duty". I can hear it now, "No Mom! -Pah-LEEZE! anything, but NOT the Ribavirin duty! I promise I won't do it again!....".
Try to set aside your time a do them all at once to save yourself the daily frustration. After they are free, put them in a pill case, see Brain Fog for some good suggestions about types.
Road Rage: see Depression or Psychosis (if you have a gun rack on your truck, please remove it prior to starting treatment)
Roche Pegylated Interferon:
There is a lot of excitement about the Roche Pegylated interferon, you only have to inject once a week! Yea! Trials are currently in progress with peg interferon and Ribavirin. Here is their very cool animated web site for those HCV info junkies out there. http://www.roche-hepC.com/
Running: see Fatigue
Running (the other kind): see Digestive Problems or Nutrition
Seratonin Syndrome: see Depression
Seizures: see Tremors/Seizures
Shortness of Breath: see Fatigue or see your doctor if its really bad-no joking!
Shots: see Injection Timing or Injection Methods or First Shot Night
Side effects from treatment or disease; including, but not limited to the in-side and the out-side of your body. Here is a complete list of interferon side effects: http://www.hepnet.com/nih/dusheiko.html. Please note that the amount, intensity or lack thereof of sides you experience are NOT necessarily an indicator of whether the treatment is working or not. Sides often seem to come and go in cycles, what is bothering you one week, may be replaced by something altogether different the next. I like what Robin says about them, "The wheels on the bus go round and round, round and round...", you get the picture.
If you are still experiencing sides after treatment is over, see Withdrawal.
The dry skin from the interferon and the Riba-rash can be potentially very big sides from treatment. It seems to affect fair skinned people the most. Many describe the feeling as being like little bugs crawling all over your body. Your skin is also dry and very sensitive from the interferon. Freyja is sure that the Princess from the Princess and the Pea must have been on interferon treatment!
Your skin is your largest organ, and skin integrity is very important to your overall health. Spend time on it, do some preventative maintenance on it - before it gets bad. Your skin will heal slower due to low platelet counts and lower white blood cell counts (WBCs) which can make fighting infections more difficult and slow the healing process. The human body is an incredibly complex entity, when you are on interferon, your body is told that the a number one task is to fight viral infections. Unfortunately this leaves you open to bacterial and fungal infections, so use common sense. also see Infection
Winter is also a drying season, run a humidifier, take warm, not hot showers, don't take baths (soaking can be very drying and irritate your skin), tap water contains a lot of chlorine. Chlorine is a bleaching and color oxidizer which dries and strips your hair and skin of natural oils and color during a hot shower or bath. Chlorine also absorbs into your skin through your pores. This can aggravate sinuses, irritate eyes, and cause rashes. Try to get a Chlorine filter for your shower head.
When showering, try to use a mild non-perfumed bath soap or gel. Deodorant soaps may contain chemicals that could be hard on your delicate skin. Use a soft cloth, no hard rubbing or scraping! Do not pick at your blemishes!
Try to put only soft natural fibers next to your skin. If you wear a bra (not occasionally but every day), get an all cotton one to reduce the irritation from the elastic. Victoria's Secret has a wonderful line of soft stretch bras, or get an all cotton sports bra. Carefully cut out those scratchy plastic tags in the back of your clothing. Do not violently rip them out with your teeth as Lacey and Freyja did, it will leave holes in the back of your clothes.
Here is an overview on three approaches to skin care while on combo:
Over the counter: To help preserve your skin integrity use a good lotion on your skin every day, am and p.m.-especially when getting out of the shower. This stuff is excellent! Call your pharmacy and ask if they carry Aveeno lotion (made with colloidal oatmeal), if not, they can order it for you. Does not require a prescription. Good to keep the itching at bay, good overall moisturizing lotion to use everywhere before dry patches, cracks and sores form. Bag Balm (also known as Udder Cream) is also a good moisturizer (if you can stand the smell!). Eucerin Lotion is also inexpensive and great for dry skin.
For the face, I like PX Prescriptives-Flight Cream - "Instant Help for Dehydrated Skin" for the "Mummy Skin" on your face (your face will be as soft as a baby's butt, but your wallet will be hurtin'-$36 for a 1.7 Fl. oz tube that lasts about 2 months). Full of aloe, eucalyptus , and other great stuff, can slap it over makeup-sinks right in, no smearing.
If you start to get the "Riba-Rash" (small blister like eruptions that itch like hell-look like flea bites and leave oozing sores when scratched) get a hydrocortisone cream or Benadryl or Gold Bond lotion-they seem to help somewhat. Downside: If you've got it bad, they usually don't last more than 4-5 hours at best. Not enough for a good nights sleep. Hot showers seem to aggravate them.
Homeopathic: Calendula lotion (made from Marigold flowers) helps sooth skin, aides in healing. Here is a link I wrote about it with a place to get it on the web: http://my.webmd.com/roundtable_message/221527.
Prescription: If all else does not provide you with consistent relief, and you are tearing your skin up- then ask your doctor to prescribe a good antihistamine. You are having a severe allergic reaction to the Ribavirin, it's not uncommon at all. I use Zyrtec, it goes right to the skin, does not make me drowsy. Iíve also heard good things about Claritin (also by Schering) and Allegra. Also, ask your doctor for Fluocinonide Cream USP 0.05, even doctors use it for their cracked skin from all the hand washing.
Freyja gets Elocon from her primary care physician. Can you guess who sells it? If you guessed Schering you get 100 points!
If you must scratch your itches, Pier One has excellent bamboo back scratcher for about .80-get many and put them around your house, they work much better than steak knives or screwdrivers! Scratch gently! Do not tear or rip your skin.
Lotion applicator- apply lotion to your back, if you don't have someone to do it for you, order a lotion applicator from a senior catalog -try Dr. Leonards-1-800-785-0880 - ask for #921 its $5.99.
Red itchy eye lids- This is a documented side from the Ribavirin. The combo can also cause one or more of your eyes to leak a lot which irritates your skin. Tears can be rather caustic to tender skin, if it gets red and raw try putting Chapstick on your cheek under your tear duct and on the side of your nose, wherever it is red. This sounds gross, but it doesn't show and it really works. Try Badger Balm (No Badgers were harmed in the preparation of this product!!!-made with olive oil, bees wax, castor oil, aloe vera and sweet birch in a easy to carry tin, non-greasy also good for chapped hands or other chapped areas) seems to work nicely on my poor eye lids. Cold-pressed Castor Oil also is also soothing, but kind of yucky, I use it a night sometimes. Hyland's Calendula Spray is really great. It's ingredients are: 22 percent extract of Calendula flowers (Marigold) in glycerin and water. I spray it on my eyelids in the am and p.m.-also works on hard to reach itchy spots on my back. About $4.50 for a 1oz bottle. You can get all these products from your health store, Whole Foods or Fresh Fields. Do not use calendula lotion or gel in the eye area, they may contain petroleum products that may irritate your eyes and make them swell (I know this from experience).
Here is a good place that you can get the Calendula spray on the web: http://www.vitaminchannel.com/manf/HylandsStandardHomeopathics.htm, or here is the direct link: Hylands Calendula Spray. If you order $50 or more from the Vitamin Channel, shipping is free.
Here is a place on the web where you can order the Badger Balm: http://www.nutritionpantry.com/bodycare.htm.
Or, another soothing thing to do for your eyes is to slice up some cucumbers and dip them in yogurt and put them on your eyes. Can be eaten afterward if you are really hungry, please do not serve to guests from your face, Miss Manners would not approve.
The red itchy eye lids can also irritate your hair follicles, mucus membranes and ducts in the eye causing a Sty. A sty is a bacterial infection, you are more prone to those while on interferon therapy. If you feel a sty coming on, make yourself an herb tea (Eyebrite is good for the eyes-can get it at any health food store) and take the warm tea bag and apply it to your eye several times throughout the day until it subsides. Hopefully, this will keep it from "heading up" and looking really gross. Here is a very good article by doctors from Calgery Regional Health Authority: http://www.crha-health.ab.ca/hlthconn/items/stye.htm
Shaving: Try not to while you are on treatment, especially with dull blades (Lacey says that clam shells work well;-). Dull razors will scrape off the top layer of your skin, causing tiny cuts which may irritate your sensitive skin and cause a Riba-rash to appear. Once the rash "blooms", it's very difficult to get it to heal, so taking some preventive care while on treatment is important.
Shaving tips for guys (hey-we didn't forget about you!): Consider how nice you will look in your full beard and soft flannel shirts. Hey, kind of sounds like Al on Home Improvement! But seriously, the constant scraping of a dull blade across your face will probably cause irritation on treatment, you want to take steps to and maintain your skin integrity. Be warned-the rash that can develop on treatment is NOT a pretty one.
Start with the proper equipment, use a boars hair brush and purchase a high quality type razor (try one with a twin Microfine blade and a pivotal head). Keep your blades in very good shape and replace them frequently
Take your time, go slowly- try not to cut yourself, wounds can take 3 times longer to heal on treatment.
Soften whiskers first with hot water (or take a shower first) -This is extremely important!
Shaving soap should be high quality, some prefer glycerin based.
Use a hot lather, shaving creams in a can may contain many chemicals, and he does not recommend it for the serious shaver.
Shave with (not against) the grain of the hair
Do not go over the same spots too many times
Rinse face thoroughly with a face cloth to remove any residue that may cause irritation
Follow with 3-4 splashes of cold water to close the pores and tense the skin
Do not use an over the counter aftershave! Most contain alcohol and other chemicals that may be drying and irritating. Witch hazel is a good alternative.
Follow with a high quality man's moisturizer, such as Clinique.
If you can get away with it, try to give your face a rest and only shave every other day, the whiskers will be a bit longer and easier to cut. Also, try to gently exfoliate your skin several times a week to keep your pores clear, use a loofah facial sponge and a high quality gentle men's facial cleanser. Important-if you use a septic pencil or bits of tissue to staunch the blood flow from cuts, dispose of them properly and keep all personal items (including razors) separate from those of your family.
For the ladies: If you must shave your legs, follow the same steps as above and use a high quality shaving gel with aloe or Vitamin E. Use lotion on your legs daily to prevent flaking and dry patches. An alternative to shaving is to go "au-natural" and tell people that you are European. Lacey conceals her hairy legs by wearing Leggs Winter Hose, they come in assorted colors and also help increase circulation. Yowza! Freyja says that Lavern of "Lavern & Shirley" use to extol the virtues of hairy legs--what better way to keep your stockings up? ;-)
Waxing/Hair Removal/Cosmetic Treatments: Waxing your legs, upper lip or bikini area while on treatment is ultimately your decision, be careful. Pouring hot wax on your sensitive skin and ripping it violently off will succeed in removing not only the hairs, but also the top layer of your skin. It also hurts twice as much on treatment. Believe me, I've been there before. Several months ago I had my bikini area waxed, and the resulting rash was not pretty, and also took quite a while to heal. Also, be cautious with any electric or laser hair removal systems, and chemical dermabrasions or peels. Everything takes longer to heal while on treatment. Please tell anyone that plans to perform these type of procedures on you about your condition.
Sleeplessness (or I need to get some
rest dag-nab-it!): see Insomnia
Sores won't heal: see Skin Care
Smoking: see Chemical
Spelling-I can't do it no mor: see Brain Fog (look under the "Bís"...)
St. John's Wort: see Depression
Sty in your eye: see Skin Care
Sweating: see Fevers
Tanning: see Photosensitivity
Tea: see Caffeine (or drink herbal ones, see Herbs)
Teeth, care of: see Oral Care (nose, mouth, throat)
Temperature of the combo/pill and interferon:
The Intron A (or any other brand of interferon) must be refrigerated. Please note that you do not have to keep the Ribavirin in the Fridge. Here is a good post from Freyja on it: http://my.webmd.com/roundtable_message/128639
Help! My Throat feels like it's been reamed by a toilet brush!: see Oral Care (nose, mouth, throat)
Thrush: see Oral Care (nose, mouth, throat)
Thyroid: see Autoimmune Problems
Tinnitus: see Hearing Problems
Transdermal Medication Delivery (medication patches): see Headache
Keep your blood to yourself! Dispose of all blood products in a safe manner, clean blood spills with bleach. Keep your personal items separate from those of your family members (i.e. toothbrush, razor, tweezers, nail clippers, oral pics, dental floss, dentures). Be sure to inform Dentists, nail technicians, or anyone that may come into contact with your blood about your condition. If accosted by a Vampire (that includes your Phlebotomist), warn them that you are potentially infectious and not to take your blood!! ;-)
Traveling with your meds:
The Intron A (or any other brand of interferon) must be refrigerated (see reference above). Schering has a travel pack that you can order for carrying your meds. Their phone is: 1-888-437-2608. An insulated lunch bag with ice packs also work well, you can get them from Walmart or K-Mart. When flying, ask stewards for ice, or to refrigerate (not freeze) your meds for you (do not pack them they will explode under pressure, just like some of us do). Also, ask them to remember to give the meds back to you, otherwise you will forget them. See Brain Fog.
If you are experiencing mild tremors, do not be alarmed. This is a documented side effect from the interferon therapy. It can have this effect on the extremities of your body, and will probably disappear at the end of treatment. My doctors at NIH are not sure why this side effect occurs in some people, but they told me that the interferon may "turn on" over 100 different genes in the body. Please notify your doctor, especially if you are experiencing seizures. This is an uncommon side and only affects 1% of patients on interferon. Please record these sides in your Side Effect Diary (if you can hold your hands still enough to write, that is ;-).
Here is an article about it written by our doctor, Jay Hoofnagle at NIH: Seizures during alpha interferon therapy.
"U" are Very Important-don't forget
Take this year and make it for yourself, while you are on treatment it is time for you to heal.
Urinary Tract Infection: see Water
Urination (as in, incessant): see Water or P
Vertigo: see Dizziness
Vision problems like floaters, detached retinas can be traced back to the hep c itself. Here is an excellent post with all the proper medical jargon to explain how this occurs: hhttp://my.webmd.com/roundtable_message/145650
The interferon can also effect fluid levels and pressure in the eye. Many people are complaining of vision problems. My vision (and for a few others also) has actually improved on treatment. Interferon warnings also include: retinal hemorrhages, cotton wool spots and retinal artery or vein obstructions in rare instances. Please get your eyes checked after starting treatment, especially if you notice any severe vision changes or experience any ocular pain. See Neurovisual impairment: a frequent complication of alpha-interferon treatment in chronic viral hepatitis for reference.
Your vision may change (from bad to worse, near to far, far to near, bad to good or good to bad) on treatment. Unless you want to add a monthly ophthalmologist visit and eyeglass prescription to your costs, go to CVS or your pharmacy and try on those cheap reading glasses or magnifiers until you find one that works. When it stops working, keep it (you may need it later), go back to CVS and get another pair. Experiment with new looks! Bring horn rims back in style!
Everyone is different and has different needs. Please discuss all vitamin supplements with your doctor before taking them. Do not take any supplements that contain Iron, Vitamin A & K, they are fat soluble and are stored in your liver, and could potentially be damaging. You get plenty of these vitamins in your diet.
It has been shown that Iron is an important component for HCV viral replication-please check all your supplements for iron! Do not cook in iron skillets, especially acidic foods, it leaches the iron out. If you plan on taking a multivitamin, Men's One-A-Day is an inexpensive brand and does not contain iron.
It is important to keep yourself well hydrated. This is probably one of the most important things that you can do. Drink plenty of water (milk, caffeinated tea, coffee and soda do not count-would you wash your car with them?), the interferon is excreted renally (from your kidneys), you could do a lot of damage to them and also irritate your urinary tract and/or kidneys themselves if you don't drink enough water. It also helps with the sides-really.
Also, since the interferon can be dehydrating, many people also experience Constipation while on therapy (another important reason to drink water!), please record any noticeable changes in your Side Effect Diary, constipation can also be an indicator of Thyroid problems (see Autoimmune). In addition to fluids, increase your fiber intake, including fresh fruits and vegetables. I've also heard that Milk of Magnesia diluted with water or popcorn may give you some relief (don't mix them together-eww). Some people drink Aloe Vera to relieve constipation. The Mayo Clinic says not to use Mineral Oil or Castor Oil to relieve constipation, over-the-counter fiber supplement such as Citrucel, Hydrocil or Metamucil can safely be used. Here is a good article about that subject: http://www.mayohealth.org/mayo/9502/htm/laxat_qa.htm
Keep a water bottle with you at all times. Notice the locations
of bathrooms as you walk in a place, pick locations to sit that are near
them. Make sure that is bottled
water, always. Tap water is full of stuff we don't need. See
Chlorine reference under Skin Care.
Donít drink too much though, over-hydration can cause you to overwork your kidneys and do other bad things to your system. Also, try to incorporate more fluids like juice, herbal teas and broths so that you donít flush out too many nutrients. Try a low sodium/sugar sports type drink to replace electrolytes or Pedialite is also good.
I have lost a total of 20 pounds so far, I initially took Alfalfa (Saw Palmetto also works) to stimulate my appetite, and my weight loss has evened over time. Took it for the first 6 weeks, until the nausea abated (see Nausea). Weight loss has leveled-out to about a pound a week of loss. Food still tastes different to me, appetite is pretty much nonexistent (or as Lacey likes to say, "All food looks like plastic to me"). I can't seem to handle spices, chocolate, salt or strong flavors. Salagen seems to be helping somewhat with the taste changes. See Oral Hygiene for reference.
Eat whatever you feel like eating (when was the last time someone said that to you?). If you feel like pizza for breakfast and ice cream for dinner, by all means, eat it. Try making milk shakes and or eat supplement bars for extra calories if you need to.
WARNING!- Do not lose too much weight at once, it can put too much stress on your body, you need your nutrition to heal (see Nausea or Nutrition). It is unhealthy to lose more than a pound or two a week depending upon your body size and weight at beginning of treatment. Please see your doctor if you begin to resemble Calista Flockhart.
Who am I?: See Brain Fog
What am I doing here? What was I doing a minute ago? Where am I going? What is my purpose in life?: See Brain Fog, now please before you forget again!
Some people feel absolutely great after treatment but there are some that are experiencing a continuation of the side effects, even months after treatment is over. Some of these may include: shaking, rebound headache, joint aches, fatigue, muscular twitching and pain. Please talk to your doctor if the effects are too severe.
Try to purge the chemicals from your system by sweating as much as you can. Go to the gym, do some cardio, work out, take a hot sauna or a long walk. Here is a good article about the detoxifying effects of sweating: http://www.o3zone.com/ozoneser/articles/024.htm.
The Ribavirin seems to hang around for a while and may take months to leave your system. Help your body move it along by maintaining your extra intake of fluids, especially fruit juices and green drinks that contain: Spirulina, Chlorella, Blue Green Algae, or Wheat Grass. Eat lots of green leafy vegetables, if you have a juicer, make yourself some nutritious blends of fruits and vegetables. These are all natural antioxidants and may help your body to cleanse itself. Also, Vitamin E and C are very good antioxidants, here is an article about Antioxidants in general from the Mayo Clinic: http://www.mayohealth.org/mayo/9308/htm/antioxid.htm
Not this year, dear, I'm having a headache...(see Headache) Your lack of these kinds of thoughts are normal while on treatment. Sorry, lots of us are not feeling very amorous these days. I've heard that Vitamin E can help an ailing libido. Don't worry, it will return A.T. (after treatment).
Also, antidepressants that are SSRI's (Paxil, Prozac, Effexor), the lack of orgasmic ability is a well-documented side. The newest drug in this family is Celexa and supposedly does not interfere with performance in the same way. There is life after depression and drugs! Please talk with your doctor if this is a problem for you. (also see Depression)
Now is not the time for self-pity! I believe that God will never give you anything that you can't handle. We are in a tough spot, there is no time for self-pity. Try to cope with the situation as best you can. Hang tough!
Yeast Infections (both oral and other types): see Oral Care (nose, mouth, throat)
ZZZZZ's-why can't I catch any?: see Insomnia
Hang in there! We are all undetectable within 2 months of starting treatment, so there is light at the end of the rainbow!!!
We would like to thank those people from the Webmd board whose ideas we pirated for this guide and to those who sent us their input, especially Graphix and Cromme. We would also like to thank our kind doctors, Dr. Rosen at OHSU and Drs. Hoofnagle, Doo and Ghany at NIH for putting up with us. And Lacey and I would especially like to thank the kind nurses and staff at NIH for being so very sympathetic and not making us wait forever to see them and also for distributing our guide to other patients!
We also want to thank our support group leader at WASH http://www.hepatitis-c-suprt-wadc.org, Joan Bennett Nayeri for making us organize this information by asking us to get up in front of our group and whine for three hours about our side effects.
In case you wondering if we look like normal people, here's a recent photo of us wacky babes!
Lacey, Trishamn & Freyja
Please feel free to e-mail us at: firstname.lastname@example.org or better yet, go to the WebMD health & wellness center and post your question on the Hepatitis C Message Boards or chat room (We hang out on the Message Boards). You'll meet lots more people that way!!! http://hcv.webmd.com/hepatitis_c_1.html
Do I REALLY have to scroll all the way back to the top of the page? (ok, ok -click here)
Please feel free to link to our site and make copies of the guide for distribution to your local support group, but don't just take it without giving us some credit, we worked our #?*%! off on this thing!
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Copyright © 1999 The Madheppers
Patricia Nolan, Becky Lorenz and Elizabeth Maxey