Hi SW,
Well, guess you've got things going by now. Sometimes the first half dozen or so shots can be very bad. . . and then things improve substantially.
I remember your first posts. . . you're the geno 4. Your chance at getting rid of the virus is very good. It's generally agreed that not missing doses. . . especially during the first 4 to 8 weeks is crucial.
The following is pasted from someone else's post. I can say I do agree with most of the suggestions.
When things get difficult, try to remember you're on a well trodden path. Many of us have gone before you. . . . and come out the other side
without the virus.
How to Prevent Side Effects During Hep C Treatment.
One of the most common side effects of hepatitis C treatment is FLU-LIKE symptoms which can include: Fever, chills, body aches, sweating, headaches, runny nose, watery eyes...I think you get the picture...it feels like you have the flu....but having these symptoms is not a bad reaction...it's a GOOD reaction. When the Interferon starts to work, it activates your immune system . This creates a reaction....fever!...But since it doesn't feel so good, there are things you can do to minimize the discomfort.
Hepatologists say 6 regular Tylenol/Acetaminophen(325mg each) per day are okay but because I'm not a doctor, please check with your own doctor before taking anything. That's 2 tablets of Regular Tylenol half hour before the injection and the injection should be given at bedtime (at about the same time every week) so that you can hopefully sleep and not feel some of the discomfort. Let's say that in the m]orning you have a headache...you can take 2 more Tylenol but NEVER exceed more than 6 per day. Remember check with your doctor to see if this is okay. Aspirin or Ibuprofen are not recommended because they can lower the platelets and the treatment meds can do the same.
The most important thing to do to prevent side effects is to drink WATER. The recommended amount is half your body weight in ounces (that means if you weigh 160 lbs, the amount of water should be 80 ounces of water daily). You can also have juice (unsweetened), broth, jello, popsicles, lemonade, crystal light, and soda without caffeine. Start drinking since the morning of the first injection.
Avoid caffeine because it dehydrates you and you want to be well hydrated. To me it's like working against the treatment and we must use whatever we can to beat this virus...even if sometimes it may appear like a very small detail...whatever I can use, I'll use. Caffeine also causes a rapid increase in blood pressure and for those of you who have esophageal varices, this may be a problem. For diabetics, caffeine can increase the blood sugar ALL DAY LONG.
I once met somebody who was so scared of treatment that he only injected half the dose and went to bed. He didn't drink water because he didn't want to have to get up in the middle of the night....guess what happened?...yes, he got very sick....and quit. Months later he tried it again...this time he drank the water....and he sat up all night waiting for the side effects that never came.
Interferon is a protein that your own body produces. It activates your immune system to fight viruses but your body doesn't produce enough to get rid of the Hepatitis C virus. You will be getting weekly injections of a long-acting Interferon called either PegIntron or Pegasys. It is recommended that the injection be given at bedtime (whatever your bedtime is) AT THE SAME TIME EVERY WEEK or as close as you can. If you wait longer, especially with the Peg Intron, there may be gaps where the blood level may not be high enough to stop the virus from multiplying. I suggest you taking the first shot when you have a couple of days off from work.
The Ribavirin or Copegus capsules are to be taken TWICE A DAY and the doses should be 12 HOURS APART....you choose the times but try to always do it at the same times. So if you choose 8 am, the second dose should be at 8 pm. Start taking the capsules the morning of the day you will be taking your first injection. If your doctor orders 5 capsules daily...take 3 in am and 2 in pm. If he orders 6 per day...take 3 in am and 3 in pm. Taking the capsules with food improves absorption and decreases the risk of getting nausea. However, do NOT take the capsules at the same time as antacids like Maalox because that interferes with absorption.
THIS IS CRUCIAL!....DO NOT MISS ANY DOSES UNLESS YOUR DOCTOR TELLS YOU TO. Studies have shown that to expect success, you must take AT LEAST 80% of the meds, 80% of the time. If you become very anemic, the dose of capsules may need to be decreased. If on top of that you miss some doses, your chances of success decrease greatly. Be careful not to run out of medication. Get refills early.
FATIGUE--Can happen because of lack of protein..Studies have shown that people that have liver disease have a higher caloric need and as cirrhosis advances, they become malnourished. Also, nausea can cause long periods of not being able to eat. When this happens, your body uses your MUSCLE for energy, making your muscles weak and you feel tired.
Protein is only restricted when people are decompensated (liver no longer working) but if you're unsure, check with your doctor. The Schering "Be in Charge" book recommends half your body weight in grams of protein. To work out the amount for you...DIVIDE your weight by 2. The result will be the amount of grams of protein recommended for you based on your body weight. For example, if you weigh 160 lbs, your daily protein intake should be 80 grams.
Foods considered Protein-- All meats, however I DO NOT recommend red meat (it's tougher on the liver), or liver (it has large amount of iron which can accumulate in the liver and FEED THE VIRUS), Beans, cheese, tofu, soy, eggs (or egg whites), peanut butter and all nuts. There is also protein in many vegetables.
Since having the right amount of protein may mean having to eat more food, using POWDER PROTEIN (WITHOUT IRON) is a good alternative. Get something that has 30-50 grams of protein per scoop. That way you can have a protein shake in the morning and the rest you can get from food. Having the protein shake in the morning will help give you energy during the day.
I also recommend NOT cooking your food in iron skillets. Some of the iron can be absorbed by the food. Please don't even think about eating raw seafood. If contaminated it can cause fulminant hepatitis.
To prevent fatigue ask your doctor if you can take a daily multi-vitamin WITHOUT IRON (very important). Vitamins for "mature" people (like Centrum Silver) don't contain iron. Again, check this with your doctor. A study done by Schering Pharmaceuticals showed that using an anti-oxidant vitamin daily, helped to prevent anemia ONLY in the first 12 weeks of treatment...I say, better than nothing.
AVOID taking herbal meds without your doctor's okay. If your doctor says it's okay to take Milk Thistle, it should have 70-80 % Sylimarin, the active ingredient, to be beneficial. Milk Thistle has protective and anti-inflammatory properties.
AVOID Gingko, Kava, Ginger in large amounts, Garlic capsules (garlic in food is okay), Valerian Root, Comfrey, Germander, Chaparral, Gordolobo. They can all be toxic to the liver. St John's Wort (an over-the-counter anti-depressant) can interfere with the Peg and make your treatment ineffective!!!
EXERCISE WILL HELP NOT JUST PREVENT FATIGUE BUT ALSO DEPRESSION.
Depression--The Peg injection alters certain chemicals in your brain causing depression. It can happen to anybody at any time and can be severe enough to cause suicidal or homicidal thoughts. Waiting for depression to go away or telling yourself to be strong won't work. The only thing that will help is anti-depressants. It is critical that you recognize the symptoms of depression early since anti-depressants take about 2 weeks to start to work. Symptoms can include: Sadness, crying, alienating yourself from others, not enjoying the things you usually enjoy, innability to sleep (or waking up after only a couple of hours), severe anxiety at night, palpitations, severe irritability (anger).
If any of this things happen, notify your doctor immediately so he can prescribe an anti-depressant. Anti-depressants can take a couple of weeks to start to work so don't wait to tell your doctor.
***Remember that most anti-depressants, like Paxil, Zoloft, and Celexa can cause impotence in men while taking them. Wellbutrin does not.
LOSS OF APETITE, NAUSEA, VOMITING-- When we are dehydrated we crave water, but during treatment, when we lack protein, instead of craving protein we get LOSS OF APETITE and NAUSEA. To prevent this, eat the proper amount of protein for your body weight...push yourself. You can also use Ginger ale, 7-up, saltines, jello, and keep drinking the water. If the nausea is severe, ask your doctor for medication to make it stop.
DIARRHEA--Next time you see your doctor, ask him, "If I get diarrhea, what can I take?" They usually let you have over-the-counter meds like Immodium and of course, you would increase the amount of water you are drinking.
HAIR LOSS--You may notice more hair on your brush and your hair thinning but you won't go bald. Things that can help: Nioxin shampoo/conditioner, soft brush, not shampooing daily, silk pillowcase to prevent pulling your hair when you turn, avoid jells, harsh chemicals, blow driers, curling irons and rubber bands that pull our hair. Use hats, wigs or get a short haircut.
RASH-- A rash caused by Interferon is usually mild, can come and go and it's not itchy. Try using lotions or Aveno soap. The rash caused by Ribavirin capsules can be severe, anywhere on your body, it's very itchy and can get worse when you take more capsules. If it happens, notify your doctor. Severe reactions are very rare. If you feel like your throat is closing, get help immediately!
SUN SENSITIVITY-- Did I hear someone say tanning bed? Absolutely not! Interferon can cause you to burn easily and get skin cancer. It also causes increased sweating. Avoid very hot showers and jaccuzis. It remainds me of hard boiled eggs tee, hee....and I've seen people pass out after. Your eyes can also be affacted by the sun and since Interferon can cause them to get very dry, this would only make it worse. For dry eyes you can use natural tears to lubricate them, DO NOT USE Visine which dehydrates. If you are going to be out in the sun for prolonged periods of time, use sunblock, hats and long sleeves.
RETINAL BLEEDING-- For diabetics, it's recommended they get an eye exam, done by an opthalmologist, before starting treatment. Your doctor should check your eyes at EVERY VISIT. This is done by shining a light and looking inside the eye. Notify your physician immediately if you experience vision changes like: Blurry vision, black spots, floaters, blind spots, tunnel vision or eye pain.
The RIBAVIRIN or COPEGUS capsules can cause multiple blood abnormalities.-- Anemia (iron won't help since this is caused by the capsules and not by iron defficiency). Low white cells which defend you against infections, Low platelets (responsible for clotting), Low Neutrophils (white cells that defend you against bacterial infections), increased bilirubin (causes yellow in eyes and skin), increased uric acid (too high causes gout), high blood sugar even if you are not a diabetic, and low or high thyroid (which may or may not resolve after treatment).
ANEMIA.....caused by the Ribavirin/Copegus capsules. Symptoms can include fatigue, weakness, shortness of breath, and in some cases, chest pain which can lead to a heart attack (especially if you have a history of cardiac problems). Report all episodes of chest pain to your doctor right away!!!
Dose reductions are to be avoided if at all possible. If the hemoglobin drops to 10 or below (or you are having severe anemia symptoms), your doctor can prescribe a medication to help the anemia called Procrit or Aranesp (same as Procrit but long-acting).
Since Procrit is not yet approved by the FDA for the treatment of anemia caused by the Hepatitis C treatment, your insurance company may deny it.....this can be avoided by using a chemotherapy CODE. That's why some doctors send their patients to see a Hematologist so they can prescribe the Procrit (which is unnecesary and time consumming. Procrit takes 2-4 weeks to START to work).
If your doctor prescribes Procrit, make sure he CHECKS YOUR IRON. If you don't have enough IRON STORES, Procrit WILL NOT WORK!!!! Even though some Hepatitis C patients have too much iron, not everybody does.
LOW NEUTROPHILS-- Neutrophils are white cells that protect you against bacterial infections (throat, sinus, urinary, skin infections, etc). If the neutrophils are too low, your doctor may ask you to skip a Peg injection or cut the dose in half. Sometimes that's all it takes for the neutrophils to go back up to normal. However, if they remain low, your doctor can prescribe NEUPOGEN.
Remember that the goal is to avoid Peg/Riba dose reductions or interruptions....and the use of Procrit and Neupogen may be needed to be able to maintain the dose that will give you a better chance at clearing the virus.
It is extremely important that you have your blood tests done on time so blood abnormalities can be taken care of quickly and your treatment not be interrupted. Ask your doctor for copies of your blood tests results so you can keep track. After all, this is YOUR treatment.
I have tried to cover everything I could think of...but you are the one that knows your body best. If you think something is wrong...tell your doctor. Only your physician knows the exact condition of your liver and nobody's advice should replace that of your physician's.
Sources:
AdvancMed Speaker's Program.
Schering Speaker's Program.
Schering's "Be in Charge" book.
Projects in Knowledge, Side Effect Management Handbook.
http://www.projectsinknowledge.com/Init ... ndbook.pdf
HCV ANONYMOUS
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