One of the things that freaks people out the most about Hepatitis C treatment is those pesky side effects. So much so that some people have refused treatment because of fear of experiencing those symptoms. We’ve all heard the horror stories, in fact, I was a horror story. I was one of those who had every side effect listed on the package insert. That being said, I still made it thru treatment. Was it difficult? Yes. Was it doable? Yes. Are there tricks to helping you thru it? YES!
There is one thing that will help you with almost all of the side effects from treatment. Water. Yes, water. Treatment medications are very dehydrating and dehydration happens rather quickly once you start taking the meds. The rule of thumb is to increase your normal fluid intake by one gallon a day. You should be always drinking something. The fluids that will best help you maintain hydration are water, juices. juice drinks and Gatorade type drinks. If you find, like I did, that juices were hard to tolerate, try diluting them with water. Increasing your fluid intake is key in getting thru this treatment with as few debilitating side effects as possible.
Below is a list of the most common of side effects on the current Standard of Care treatment for Hepatitis C and ways to help combat their effects. At this time, all current approved therapies include both Peg-Interferon and RIbavirin. Some treatments, for Genotype 1, include the use of a protease inhibitor like Incivek or Victrelis. This list will be updated as new treatments get cleared thru the FDA.
Fatigue is the main side effect of Interferon and Ribavirin therapy. Part of this comes from the Interferon which is stimulating the immune response so the treatment can work, this causes a lot of the fatigue. Ribavirin is also responsible for this symptom as it is toxic to red blood cells and causes anemia which will cause most patients to feel exhausted. This fatigue can also come from dehydration, insomnia and anorexia which are all other side effects of this treatment.
- Try to get plenty of sleep. Sleep in 8 hour stints may be impossible but nap when you can.
- Water, water and more water.
- Eat well balanced meals whenever you can.
Headaches are a very common side effect and can be a direct result of the Interferon shot. They can also show up because of anemia and dehydration.
- Use the same management steps as outlined above for fatigue.
- Ask your doctor about using Tylenol, aspirin or Ibuprofen. There is a limit to the amount of Tylenol you can take, usually no more than 6 non extra-strength in a 24 hour period. If you have significant liver scarring or cirrhosis, aspirin and Ibuprofen can cause issues.
- Anti-migraine medications like Imitrex may be an option if you are having migraines.
Fevers are a side effect of Interferon and tend to be the worst several hours after the injection and the following day. A fever of over 101F (38.5C) for more than 48 hours or not immediately after an Interferon injection are cause to contact your physician. You need to make sure that you do not have an infection causing the fever. PLEASE contact your doctor if you are having issues with fevers.
- The very same things that will help a headache and fatigue will also help with a fever.
- Cool compresses on your neck, wrists, ankles and stomach will help bring fever down.
- A lukewarm bath or shower will also help bring your fever down but please, if your fever is making you feel unstable, do not do this if you are alone.
- If your fever gets higher than 103 degrees, contact your doctor immediately.
Muscle pain, or as it’s called in the medical community, myalgia, is a side effect of the Interferon. The exact reason for them is unknown at this time but they appear to be related to the systemic inflammation and dehydration from the treatment medicaitons.
- Water, water and more water. Yes. Water IS the answer to most of the side effects of treatment.
- Sleep. Again, try to get as much sleep as possible.
- Eat. Many times the treatment meds cause a loss of appetite so if you can’t handle a regular meal, try small meals or snacks every few hours. This really will help.
- Tylenol and Ibuprofen will help with this pain, again, please check with your doctor to find out if you can take these meds and if so, how much and how often.
- Warm baths can also help loosen muscles up and alleviate some of the pain.
When it comes to gastrointestinal side effects of treatment that includes Interferon and Ribavirin, nausea seems to be the most common side effect. The nausea becomes so pesky that for some patients, they can’t tell if they are nauseous or hungry. The sensations become so similar that it poses a real problem. Rule of thumb, if you’re not sure if you’re hungry or nauseous, eat something. If you throw up, it was nausea. You will find that many times, it’s hunger. Both medications can cause nausea. If you are having nausea on days that are not shot days, the nausea is from the Ribavirin. Try taking the medication with food. Also, eating small meals more frequently can help as well.
- If you are having issues with nausea on days that are not shot days, it is more than likely a result of the Ribavirin. Try taking your Ribavirin with food. You can also try eating small meals throughout the day rather than having breakfast, lunch and then dinner. Break, down breakfast into two meals instead of one. Do the same with lunch and dinner. This will give you 6 small meals a day and help with the nausea.
- Ginger is very helpful to quell the nausea. You can find ginger in teas, ginger snap cookies, ginger candies and of course, good old fashioned ginger ale.
- Saltine crackers or dry toast will help settle your stomach.
- Try to avoid smells and foods that trigger your nausea. The smell of cauliflower steaming can be particularly off putting.
- If none of this is helping you, ask your doctor if you can take Compazine or an over the counter motion sickness pill.
Anorexia is not unusual on treatment and it is definitely induced by the medications. Most patients will lose anywhere from 10-15 pounds, with some losing even more during this process. Some of the weight loss comes from the nausea, some from the change in the way food tastes. Some foods can really taste “off” while on these meds, there is also a complaint of a metal taste in the mouth.
- Try eating smaller, more frequent meals. It is sometimes easier to get a little food down than a lot at once.
- Nutritional supplements such as Ensure or nutrition bars are helpful.
- Choose high protein foods such as turkey, fish, peanut butter, eggs and cheese.
- There are several things that will help with the altered sense and/or metal taste sensation. Junior Mints (try freezing these), dill pickles, lemon drops and zinc lozenges. For some reason, these seem to reset your taste buds, even if only for a little while.
While not the most common of side effects, it does happen and when it does, it can be ugly. This is not a constant side effect and is usually present at the beginning of treatment and then tapers off. If diarrhea is happening frequently or lasting more than a day, PLEASE contact your doctor.
- Water, water and more water. Diarrhea will make dehydration worse so it is important to replace fluids. I cannot stress this enough.
- Avoid or limit milk products.
- Avoid or limit caffeine. Try herbal teas.
- Use the BRAT diet. Bananas, rice, applesauce and toast.
- Imodium can also be used as can Metamucil.
This is, by far, the most common and most irritating side effect of Hep C treatment. Insomnia can aggravate other side effects such as headaches, fatigue, depression and overall irritability. Insomnia is such a horrible side effect that when it affects you during treatment, it can often lead to the person not being able to work.
- Avoid caffeine at night.
- Try to minimize distractions in the bedroom. Turn off the tv, turn out the lights. Don’t force it. You cannot force yourself to sleep.
- If you have been in bed for an hour or more and you still cannot sleep, get up. Get out of bed and go in another room. Watch tv, read, do something that is calming.
- Try herbal tea before bed. There are some that are calming like Chamomile.
- Ask your doctor for something to help you sleep. This may or may not be a sleeping pill. Sometimes a low dose of a Valium type drug helps.
Unfortunately, this is a very common side effect but it does not present itself at the same level to everyone. Some people may have only slight issues and be a tad out of sorts, while others may bite your head off for what seems like nothing at all. Most of the things that help in this area, do not involve the patient as much as the people around him or her. This is where family and friends need to be aware of what is happening.
- While this side effect is hard to control, educating the patient and their family is key. Family and friends need to be aware that you may have a quicker temper than normal and be far less understanding during treatment. If everyone is aware of this, feelings are less likely to be hurt. It is also not uncommon to lash out and then forget the entire incident happened within a short period of time. Spouses get their feelings hurt and the patient then has no idea what happened. Take all outbursts with a grain of salt.
- Share your feelings with people who understand. If your family or friends don’t get it, consider joining a support group. There are many online support groups for Hep C patients and their family and friends. If you have a Facebook account, this website has a FB support group. These groups on Facebook are usually closed groups so that no one who isn’t in the group can see what you post.
- Know that certain job situations may make make irritability worse. Make arrangements in advance for flexibility in your work schedule if you can.
- Know that other side effects you may be experiencing can make you irritable as well. Try to keep your fatigue under control. If you need to lay down for awhile, do it. Don’t fight it.
Although depression does not happen to everyone who is treating Hep C, it is a very important side effect to keep under control and avoid, if at all possible. Suicide is a real threat when a Hep C patient is undergoing treatment so depression is taken very seriously. Most doctors put their patients on an anti-depressant 6 weeks before treatment starts for this very reason.
- If you have not been put on an anti-depressant prior to starting treatment and you are feeling the symptoms of depression, ask your doctor for a prescription. Celexa is a commonly used anti-depressant that is often used in conjunction with HCV treatment.
- Close monitoring during treatment, by both medical staff and family is important.
A little less than half of the patients lose a significant amount of hair during HCV treatment. This is from the Interferon. For most people who have this side effect the hair loss is gradual, becoming more severe as the treatment progresses. This is not a patchy hair loss as in a normal chemotherapy treatment but an all over thinning of the hair. Your hair WILL grow back after treatment ends.
- If you have long hair, cut it. The weight of long hair will make hair fall out easier.
- Use a silk pillowcase when you sleep as this tends to let the hair slide versus catching on the material and pulling out.
- Do not pull or play with your hair. Avoid braiding it, pony tails and vigorous brushing.
- Use a gentle shampoo and as few hair products as possible.
- Try not to use blow dryers, curling irons or flat irons on your hair during treatment.
Dry skin is a side effect of the dehydration that comes with this treatment. If you are having issues with dry skin, you are not drinking enough water.
- Water, water and more water.
- Avoid hot showers and baths as this tends to dry your skin out even more.
- Apply a moisturizing lotion right after a bath or shower when your skin is still damp.
Ribavirin can cause a skin rash in some people. It is a very fine, red rash and is usually present on the arms, trunk of the body and legs. One of the drugs that is used with Interferon and Ribavirin for patients who are Genotype 1 is called Incivek and it too can cause a rash. The rash from Incivek needs to be watched carefully as people have DIED from complications of this rash. If you are on Incivek and develop a rash, contact your doctor IMMEDIATELY. If you are not on Incivek, you can handle the rash in the following ways.
- Moisturizing lotions and creams often help. If not, try something with hydro-cortisone in it. You can get these over the counter in your local pharmacy or drug store.
- Benedryl type medications will help with the itch and the rash.
- In sever cases, your doctor may choose to lower your dosage of Ribavirin temporarily.
- For a rash at injection sites, change the location of your injections. You should be using a different spot each week. Do not give yourself an Interferon injection at a site that is red or raised.
These are not the only side effects of treatment but they are the ones that you can manage on your own. If you have anything that you are concerned about please contact your doctor immediately. Most doctors have a treatment nurse whose sole purpose is to help you manage the side effects of Hepatitis C treatment. Feel free to contact her with any concerns you might have.
I hope this list helps you.. I wish you good luck and SVR!Written by Teri Gottlieb