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Managing treatment

Managing your treatment is about making it as tolerable and effective as possible. Here are some tips and suggestions from people who have experienced it:

  • Be prepared for a flu-like reaction a few hours after the first interferon injection (almost everyone has this) and treat it exactly as you would flu. For example, when you come home from taking the injection (your nurse will probably want you to do the first one with them in hospital) take some paracatamol and retire to bed with a hot water bottle. Don’t plan on being full of energy the next day.
  • Other than the first time, most people do not get a significant reaction to the weekly interferon injection. If you do it is worth taking it on the weekday that you have the least to do the following 48 hours. This might be Friday, if you work, or earlier in the week, if you have hectic family weekends. The day you first take it will be set by your nurse’s appointment. If you want to change the day of the week, do so for your second injection. After that, though, try to stick to the same day every week so as to keep consistent levels of the drug in your system. It also makes it easier to remember to take it.
  • Most people find having to take their ribavirin twice a day harder to remember than taking their interferon once a week. It’s a really good idea to get into the habit of ticking off on a chart of diary each morning and evening dose you take. That way it’s really easy to see when you have forgotten one. You might also want to set reminders on your phone to prompt you.
  • Drink plenty of water. Interferon tends to really dehydrate you. You can get an indication as to whether you are dehydrated by checking the elasticity of your skin by pinching it up and letting it fall back (ask your nurse to show you). And don’t drink huge quantities of tea. The tannin in tea interferes with the body’s absorption of iron, which will tend to increase anaemia.
  • Eat as and when you can.. Loss of appetite is a frequent response to treatment, but try to eat anyway. Eating little but often can help (fruit, nuts, shakes or anything that gives you a boost of energy and nutrients but is easy to digest). There is some evidence that the side effects can be lessened, at least in the first few months, by taking anti-oxidants. You can take these in the form of supplements like vitamin E or vitamin C but they are best taken in the form of fresh fruit and vegetables.
  • For some people complementary therapies may help. Because many of the side effects of interferon are similar to hepatitis C symptoms, therapies that worked for you before may now benefit you on treatment, like acupuncture or massage (see the alternative medicine section of this site for more information). Be extremely cautious about herbs and be sure to tell your consultant what you are considering taking. You should also tell your herbalist that you are on hepatitis C treatment. There may be interactions between interferon or ribavirin with some herbs so it is important to check first before you take something.
  • Make allowances for yourself while undergoing treatment. Expect to feel more tired than usual and to not be able to do as much as you normally can. Take more rest when you need it and try not to feel bad about it. Even if you’re not doing much, your immune system is working flat out.
  • Continue with your daily life as much as possible, whether that’s work, studying, or socialising. You may have to cut down the amount you do, but being left with too much free time can often just make you more aware of how you are feeling.
  • Treatment may not make you depressed but it’s important to be aware that depression can take some months to develop. If you do start to become depressed, don’t ignore it. This does not necessarily mean taking anti-depressants. But it does mean talking about it and getting the correct help and support. This could be from your consultant, your nurse, your GP, the Hepatitis C Trust Helpline or a support group. If you don’t, it can be easy to find yourself losing your grip on treatment by forgetting to take the medicine, not looking after yourself and missing hospital appointments.
  • Make sure you are in touch with other people doing treatment. Try to talk to or meet up with them regularly. Many people have said that this was the single most important thing they did to cope with treatment.
  • People on treatment can become irritable, intolerant, moody and generally hard to live with. It can help if you warn those close to you that this may happen by explaining that it is the drugs doing this to you. It will also help if you can monitor it yourself so you don’t say or do things that you may later regret.
  • Keep a daily diary of how you feel. This will help remind you of the things you want to talk about when you see your nurse or consultant. Liver units are now so busy that it may be very difficult to get to speak to them except at appointments.
  • Some people have found it very satisfying to pin a weekly calendar up on the wall and cross each week off as it’s completed. You can then see at a glance how many more weeks you have to go.
  • Take someone with you or arrange to speak to someone immediately after you get any results. It is likely to be very distressing if you find that you are not responding to treatment and even worse if, after clearing the virus, it comes back. This is especially true if you found treatment really hard.
  • If you are going to travel on treatment make sure you plan ahead. After the first couple of months you will probably find your hospital is fairly flexible about appointments. But make sure you have enough medicine (it is typically dispensed a month’s supply at a time). Although interferon should be kept in the fridge, it is fine to keep it out for travelling. Only if it is going to be out of the fridge for more than 24 hours do you need to think about a cool bag (and that is being over cautious - in tests interferon kept at 30C for a month lost less than 5% efficacy. If you are flying, you will need a letter from your hospital explaining that the syringes and needles are part of your treatment. Keep both the interferon and ribavirin with you in your hand luggage, for safety and because temperatures in the hold of aircraft get extremely low.