Living with Treatment

Lets get the bad news out of the way first!

Treatment for Hepatitis C is not a pleasant experience. Nearly all patients experience side effects from the drugs to some degree, and this adds to any symptoms from the virus itself, and any pre-existing medical problems. In most cases side effects are bearable, and the vast majority of patients complete the course of treatment.

With one exception, success rates for treatment cannot be described as good. The exception is for genotype 2 where over 95% of patients are cured. They also benefit from shorter treatment duration and lower drug doses. For most of the remainder the success rate is quoted at 55-65%, but this is varied by factors such as viral load, length of infection, age and many other parameters. In most circumstances success rates are basesd on American drug trial information which is based on very poor patient compliance. The resulting figures tend to be very pessimistic. In UK practice, nearly all genotype 2's are cured, around 85% of genotype 3's, and around 65% of genotype 1's.

OK - Thats the bad news out of the way!

Patients with a positive mental attitude generally do better whilst on treatment. Your first dealings with your specialist are a good time to start. Resolve that you are going to be a 'perfect patient', by which I mean that you are going to be the patient that the specialist can rely on. You of all his patients can be guaranteed to be at your appointments at least ten minutes early, well prepared, with any necessary paperwork to hand. You will do your level best to make his life easier. Nothing will be too much trouble. You will have done your research thoroughly, and will not require answers to all the idiot questions that most patients have, and can discuss the finer points of your condition in an intelligent and informed manner. Generally cultivate a good working relationship. This is all part of a ploy to get your specialist's full attention if you do have a problem during treatment. If he expects to be bombarded with a list of problems, he is unlikely to pay much attention when a new one occurs.

Don't forget that it is vital to discuss any pre-existing medical problems that you have with your specialist before you start treatment. If you are being treated for depression with one of the SSRI drugs, it virtually certain that you will require dose modification and very careful monitoring during treatment. DO NOT STOP TAKING SSRI MEDICATION WITHOUT CONSULTING A DOCTOR. Patients with a history of depression represent a severe challenge to the medical profession, as theoretically Interferon/Ribavirin is contra-indicated, but this view is changing. Hepatitis C treatment is possible in most cases, particularly where depression is well controlled and stable.

You may also need to discuss the subject of contraception. Because Ribavirin is toxic there is a high probability that any child conceived while its mother was being treated with Ribavirin would be born deformed or retarded. Whether Ribavirin damages sperm is not known, but it is a virtual certainty. It makes good sense to take simple precautions and prevent any chance of an unwanted pregnancy whilst on treatment and for at least six months after finishing treatment as Ribavirin persists that long.

Treatment itself consists of tablets morning and night, and one injection per week. Sounds simple doesn't it? In the majority of cases it actually is! The tablets are best taken with food, ideally fatty food, as it improves their absorbtion by up to 60% and reduces stomach upsets and nausea. It is best to take them in the middle of a meal, not before or after. Recent studies have shown that there is a strong correlation between ribavirin levels in the blood and success rates, so make the effort to take them with fatty food where possible. The tablets tend to kill off gut bacteria which can lead to diarrhea. This can be countered by the occasional spoonful of 'live' natural yoghurt. The injections are straightforward, and full training is given. See the Hints and Tips section for more information. Spend some time and read thoroughly the manufacturers data sheets supplied with the drugs. You will find that there are certain side-effects that require you to notify your doctor immediately. Make sure that you are fully aware of these.

DO NOT DRINK ALCOHOL WHILE ON TREATMENT. This means none at all. Not a drop! Alcohol compromises the effectiveness of Interferon, and even a small amount will cause a gap in the treatment where the virus can breed and recover. Explain politely to the idiot who insists that you should have a 'proper' drink that you have no intention of throwing away all that you have been through, and that you will gladly join him for a beer the week after you finish treatment but not before! Alternatively, if you have abstained while on treatment why start again? Your liver will be a lot better off without it!

You will probably read elsewhere that patients on treatment should drink plenty of fluids. This is questionable advice. It is well known that treatment tends to cause dehydration, and hence requires extra fluid intake. However, excessive fluid intake will stimulate clearance of Interferon by the kidneys, and reduce its effectiveness. Very large quantities of fluids can be dangerous, and will increase anaemia. A balance needs to be maintained, so just be sensible with your fluid intake. A bit more than normal is fine, but don't go mad! As a general rule, if you are emptying a full bladder four or five times per day then your fluid intake is about right. For a more in-depth examination of the issue click here. There has been some research that suggests that coffee contains an ingredient that can be beneficial to the liver, whereas tea contains tannin which is definitely not. All this is unproven at this time.

Side effects of the drugs are many and vary in number and severity from patient to patient. They fall into three categories:- Those experienced by the patient, those detected by a doctor, and those noticed by associates.

From a patient's point of view by far the most common side effects are flu-like symptoms. These come in the form of feverish sensations, often with shivering and sweats. They tend to be at their worst a few hours after an injection, and three days after an injection. This is due to the two peaks in the Interferon profile. The solution, surprisingly is paracetamol (acetaminophen, Tylenol). I have never been much of a believer in paracetamol, and would normally pour scorn on it but in this case it actually works well. Two tablets each morning and night have a surprising effect, and will make life a lot more pleasant.
On the subject of over-the-counter medications and supplements, my advice is to stay well clear of them. Be especially wary of herbal remedies as these can be extremely dangerous to anyone with compromised liver function. Be aware that some over-the-counter medicines and vitamins can cause false blood test readings, as can some herbal products. Make certain that your doctor knows everything that you have taken and when. Attempting to treat side-effects with anything other than paracetamol can be counter-productive and in some cases dangerous. For instance, Aspirin can cause major problems due to its blood thinning properties. If you think that your side effects require treatment, talk to the specialist. That's what they are paid for! Don't play with fire! Be aware that treatment does depress your bodies' immune system, and any minor infection that would not normally require treatment can require medical intervention. If in doubt tell the doc!

The other very common side effects are tiredness and breathlessness, which are usually, caused by anaemia. Treatment reduces the number of red cells in the bloodstream which carry oxygen around the body. This means that sudden exertion can leave you gasping and dizzy. Your body seems to adjust to this after a time, and if you are aware of the problem you can usually avoid it. Don't be afraid to stop and recover for a few minutes. The type of anaemia caused by low red cell levels is different to that normally understood by most people in that there is usually no shortage of iron in the body. In many cases iron levels are too high, as the liver removes and stores iron from dying cells. Don't be tempted to supplement your iron levels without your doctors's advice as you could make the problem worse.

From the doctors point of view, the results of blood tests are his prime concern. Treatment can have serious side effects on blood and liver chemistry, and he will be watching the results of your blood tests like a hawk! Blood tests are usually done prior to treatment starting, weekly for the first four weeks, and then four-weekly. They are usually done on injection days, but before the actual injection. The doctor is likely to be able to detect any problem before you get symptoms of it. In some cases he may reduce drug doses on either a temporary or permanent basis if he decides that the test results merit it. He will also monitor virus levels. More on that later.

From your friends and family's point of view you are likely to become irritable and short tempered. This is a well known side effect, and probably due to the treatment affecting seratonin levels in the brain. From your own point of view you are your normal sweet loveable self, and wishing to tear the postman limb from limb when he interrupted your cup of tea is perfectly normal behaviour. Normal from your point of view, that is! You are not aware that your behaviour is anything other than normal. There is not a great deal that any patient can do to prevent 'Ribavirin Rage' as it is known, but you must remember that you cannot self-assess your own state of mind. Ask your family and friends to be tolerant, and get them to tell you and your doctor if things are getting out of hand! There is a point where in rare cases suicidal feelings start to develop. If you find it happening to you YOU MUST TELL YOUR DOCTOR IMMEDIATELY. This is very important. In many cases the use of SSRI anti-depressants can ease both 'rage' and depressive symptoms. Getting the right anti-depressant and the right dosage to suit the patient can be difficult, but the suggested starting point is citalopram at 20mg per day.

It is worth knowing that Pegylated Interferon does not cause its side effects in a consistant manner. There are two peaks in its profile. The first occurs 3-5 hours after the injection and is relatively short lived. A second larger peak occurs later, at a time that approximates to the half-life of the interferon concerned. For PegIntron (Pegylated Interferon Alpha 2b) this is 40-50 hours, and for Pegasys (Pegylated Interferon Alpha 2a) it is 80-96 hours. The first minor peak can be effectively dealt with by taking paracetamol (Tylenol, Acetaminophen) two hours after the injection. This usually negates the peak, and allows most people to sleep through it. It pays to take paracetamol at regular intervals throughout the day of the major peak, keeping two tablets for last thing at night. NO NOT EXCEED THE MAXIMUM DAILY DOSE. (Usually 8 tablets per day) Two tablets last thing at night on the days either side of the peak will improve the chances of a good nights sleep. Used intelligently, paracetamol is a very safe and effective side-effect suppressor.

There is an additional psychological pressure that tends to develop later in treatment. You tend to find that it requires a considerable effort of willpower to actually do the injection. The psychology of having to inject yourself with something that you know will make you feel unwell is interesting, to say the least. It may well be due to a fight between your concious will and a sub-concious defence mechanism.

There are many web-based support forums where you can correspond with other people who are either undergoing the same treatment, or have been through it. You are guaranteed a sympathetic hearing. A little advice from someone who has been through it all is often very helpful, and if nothing else, you can blow off a bit of steam. Just watching on the sidelines can teach you a lot, and it doesn't hurt to be reminded occasionally that there are many people a lot worse off than yourself. You need to be aware that not all support forums are what they seem! Certain forums attract the more extreme and undesireable elements, and unmoderated forums will be more attractive to those whose motivations are not entirely altruistic. They tend to be populated by people who have left or been thrown out of the better forums. The forums linked to by this site are sound, and you will get good support there.

To give some idea of the contrasting types, the Hep C Friends Forum tries hard to live up to its name and is strong on the social aspects of shared experience of living with the virus and its treatment. They are NOT good on the medical and factual aspects, so don't even dream of following any advice given there!

The Hep C Nomads forum should be avoided at all costs, being unmoderated and existing purely for the sycophantic worship of its founders, Chrissy Davis, and John Semple. (Living proof that you can fool some of the people all of the time, to quote an American president!) Being unmoderated, it attracts all the extreme elements and rejects from other forums that would not be tolerated elsewhere. (Needless to say, surprise, surprise, mentioning my name will not do you any favours there!) It is worth bearing in mind that any forum that requires you to join before you can see its contents probably has something to hide, and is likely to be operating outside the law.

You will usually find me on the Hep C UK Forum which is as good as any, and better than most!

I would reccommend that anyone joining a forum is extremely cautious about how much private information they divulge. Search engines often pick up data from forums, and this can be broadcast worldwide. Do not under any circumstances give out your surname, and be extremely cautious about releasing any fact that is unique to yourself and could allow you to be traced. Bear in mind that the so-called Private Messaging facilities may not be private at all on some forums. If you want to contact somebody privately, use email direct to their email address, not via any forum. Needless to say, I am confident about the security of the forums I link to from this site, but very hesitant about others.

Do bear in mind that if you visit forums in other countries their treatment systems differ considerably from ours. They often have the luxury of being able to choose when, where, and how they are treated. Their doctors are often allowed to tailor treatments to suit patient needs, and do not have their methods dictated to them by a government quango (NICE) which stifles any individual experimental treatment.

As a general rule those going through treatment have good days and bad days. Try to make the most of the good days, and take it easy on the bad ones. There is no need to completely change your lifestyle just because you are being treated, but being a little less ambitious in terms of getting things done is a good approach.

At various stages during treatment there are milestones. For genotypes other that 2 and 3 the first, and most important of which is the 12 week viral load test. The target is to see your virus count drop by a factor of at least 100 from its start-of-treatment level. This is called a 2 log drop. (see Technical Terms in Beginners Guide) It means that the virus is responding to treatment. Unfortunately, if your virus count has not dropped by this amount, it means that your chances of being cured by this treatment are very small indeed, and you will probably be taken off treatment. Treatment is expensive and the dear old NHS is reluctant to blow another big wad of taxpayers cash on you, having just spent a small fortune finding out that it was very unlikely to work! (Twelve weeks treatment costs 9500 US Dollars at wholesale drug prices alone, and thats without tests, etc) Genotypes 2 and 3 are generally treated for 24 weeks, without the twelve week virus test as nearly all would be undetectable at that point. The next milestones are end-of-treatment PCR tests. These detect just about any virus particles. A negative PCR at the end of treatment is a very good sign, but the one that you really want is the negative PCR at six months after treatment. If you get that you can regard yourself as cured, as the odds of the virus returning are very small indeed, something like 1%, and if it did, re-treatment would almost certainly work.

It is not all gloom and despair if you do not succeed in clearing the virus. There are many new treatments in the pipeline which are likely to be a lot more effective than current ones. Today's treatments will probably be seen as primitive and not very effective in the future, but at present they are all we have. The important thing to remember is that any treatment that reduces virus levels allows your liver to recover, halts the virus in its tracks for a while, and buys you time. That time gets you closer to the new treatment that will work for you.

Good Luck!

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