Diana L. Sylvestre, MD
Assistant Clinical Professor of Medicine
University of California, San Francisco
O.A.S.I.S. (Organization to Achieve Solutions in Substance-Abuse)
There is a perception that if you don’t have one of the major side effects of HCV treatment, like severe depression, or unresponsive anemia or neutropenia, that you should be able to get through the treatment. Side effects? Well buck up!
In fact, it’s the daily grind of the cumulative, “minor” side effects that leads many treated patients to throw up their hands in dismay and decide that the cure is worse than the disease. That is a shame. Although the expectation that you can feel marvelous while taking interferon and ribavirin is unrealistic, for almost everyone those feared side effects are manageable enough to be kept to a tolerable, dull roar.
Probably what feeds our inadequacies in side effect management is that there are potentially so many different problems in so many different patients that a cookie cutter approach doesn’t work. It takes a lot more time to understand and manage the many different systemic side effects than it does, for instance, to prescribe erythropoietin for anemia. And time, sadly, is what many medical caregivers fail to provide.
However, if you as a patient are aware of some basic side effect strategies, and inform yourself about the many potential options for managing the unpleasant nonsense that doesn’t respond to those, you will be able to advocate for yourself if you need more help. In today’s revolving door medical system you may need to take control of your treatment. In other words, the most important strategy for managing those side effects is being informed.
One more point, before we begin to discuss some of the specific side effects. If you expect HCV treatment to be the worst thing that you have ever gone through, your expectations will be fulfilled. That is a fact. However, if you look upon it as a necessary but possibly arduous path to a long, healthy life, the experience will be much more tolerable. Did you ever need to walk up a long, steep hill? Did it help to constantly remind yourself how unpleasant it was? Of course not.
Indeed, we liken HCV treatment to running a marathon. And you would not run a marathon without preparing yourself, both physically and mentally. Start managing your side effects before you start the medications. Get yourself in better shape. Start eating a good healthy diet and drinking lots of water. Gather a circle of family and friends that can help support you—and don’t forget to tell them that you may be an unpleasant jerk for awhile, but not to take it personally!
Here are some approaches to help you manage some of those “unimportant” side effects that are so important.
You will get through these. Believe it. Everyone worries about the initial fevers, muscle aches, and joint pains, and they are most definitely unpleasant. But guess what? The more serious flu-like symptoms at the start of your treatment won’t be your main problem, because they will be at their worst in the first few weeks when you are still motivated and have a pretty good attitude. Then they usually taper down to a mild daily unpleasantness that consists of fatigue and aches and blahs. That is the kind of thing that will piss you off, like a faucet dripping at night. Some people continue to have extra problems for the first day or two after their interferon injections, and time their injections on weekends so they can get more rest. But most feel kind of run down, to a greater or lesser extent, through the course of the therapy.
What can you do for these symptoms? The most important word is this: water. Time and time and time again, experience shows that water is the most effective intervention for those flu-like symptoms. Interestingly, no one knows why it works, but we do know that you need a lot: 15-20 8 oz glasses daily is the usual recommendation. Roughly a gallon—so make sure you locate ahead of time all of the bathrooms near your daily and nightly haunts. Don’t like water? Give it a try and you will: it will really help you feel better.
A couple of other points. Soda is not water. Don’t even think about it. And keep the hydration going regularly during the day by keeping a bottle of water with you, but taper off a bit in the evening so you can sleep through the night. The insomnia may be bad enough, without having to get up all the time.
Other things that you can use are Tylenol and ibuprofen. Moderate quantities of these, no more than 2 grams of Tylenol or 1600 mg of ibuprofen per day, are almost always fine for patients with hepatitis C, but run it by your doctor.
Here’s another thing you don’t want to hear. Exercise, unfortunately, is also important. I, myself, have never wanted to exercise either when I have had the flu and so I understand the reluctance. However, a modest amount of exercise is always helpful and you will feel better afterwards. Because it is really hard to get motivated to exercise, this is where discipline needs to come in. Just as you make a decision to take your shots and pills on schedule because they are important, you should also schedule a little exercise program as a required part of your treatment regimen. Not an hour of power walking and weight training, but just stroll around the block every day at 2, something like that. Do not allow yourself to get in the mode of considering it optional.
A lot of people have some nausea here and there but it is usually mild and manageable and we have never had to stop a patient’s treatment because of it. As you might guess, ribavirin is the usual culprit, but some of the other things you may take, like ibuprofen, can add to it. There are several reasons you may be getting nauseated. The ribavirin can be irritating to the stomach, increasing the acid or allowing the usual amount to cause more burning. Sometimes this keeps the stomach from emptying normally, and if it doesn’t want to go down then unfortunately it will probably want to come up. A couple of simple things you can try are spreading out the ribavirin pills over the day, and taking antacids or an over-the-counter anti-acid medication, like Pepcid AC, Tagamet, or Zantac. There are stronger anti-ulcer medications you can get from your doctor, like Prevacid or Protonix, and there are anti-nausea medications like promethazine or Compazine that can work wonders for some people.
One of the main reasons people feel so lousy on the treatment is that they don’t sleep well. Think about how you have felt after a few nights of getting no sleep. Tired, irritable, stressed out: sound familiar? Insomnia from interferon is not uncommon, whether you are administering it to yourself or whether your natural levels are high because you have a bug. If you do develop significant insomnia, it is important to try to do something about it before you become so exhausted that you throw in the towel. Everyone knows that there are lots of sleeping pills, but despite this it can be surprisingly tricky to find the right one.
First: don’t forget the exercise, and if you take a nap during the day don’t make it too long. An easy thing to try for sleeping is one or two capsules of over-the-counter Benadryl, which works for a lot of people, but remember that it can make your mouth extra dry when you are on interferon. After this you are pretty much dependent on your doctor for help. For their potential extra psychiatric benefit, we like using the sedating antidepressant-type medications, like amitriptyline, trazodone, Seroquel, or low dose Remeron. Any of these can make you too groggy, and so you may need to keep shopping. The new (expensive) short acting sleeping pills called Sonata and Ambien can be useful, as can the short-acting benzodiazepine sleeping pills like temazepam, but their effects tend to wear off and they can be addicting. Interestingly, sometimes these latter medications are too short acting if the insomnia is severe, and that is another reason we prefer the antidepressants. The important thing is this: don’t give up, be a pest if you need to. You need to sleep if you are to finish this treatment successfully.
First: you will not go bald. Second: your hair WILL return to its previous luxuriant state. Third: occasionally there can be some interesting temporary effects, like straightening of tight curls, making us wonder if there would be a market for interferon shampoo. The reality is that your hair will thin and look dry. You probably won’t like the way it looks, but the problem will be more noticeable to you than to anyone else. There’s no way to stop this, but using soft brushes, mild shampoo, and minimizing blow-drying can help. Shorter styles may look better. There is also a shampoo made for chemotherapy patients called Nioxin, sold only in salons, which you can try.
If there is a patient on hepatitis C treatment that hasn’t had some sort of skin problem, send them my way. Everyone, it seems, gets something. There are bumps, blotches, and hives that mysteriously appear, disappear, then reappear elsewhere. Most people get itchy red skin from the dryness. The stuff you’ve had before, like psoriasis or lichen planus, may blossom. And those interesting “interferon spots” at the sites of injection itch, burn, stay discolored for months, and have everyone worried that they have a flesh-eating illness. The bottom line is that this stuff will screw up your skin. Most people pay a lot of money for fancy creams and emollients, many of which moisturize initially but actually draw moisture out of the skin. As it turns out, the best treatment for the dry itchy skin is Vaseline. What you are looking for is kind of a Saran Wrap effect, not a greased pig thing. Get yourself moisturized in the shower or tub. Then take dab of the Vaseline, rub it between your palms, and then apply a very thin coating over your dry areas to seal the moisture in. Once or twice a day should be good. For the mystery blotches, you can start with over-the-counter hydrocortisone cream, which usually isn’t strong enough, then graduate up to stronger steroid-based creams or ointments like triamcinolone, applied before the Vaseline. Oh, another thing: if you itch, scratch with an ice cube. It helps numb the itch while you scratch it, and you won’t rip your skin to shreds.
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Copyright July 2003– Hepatitis C Support Project - All Rights Reserved. Permission to reprint is granted and encouraged with credit to the Hepatitis C Support Project.
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