Q. I know there is no clear time line with the progression of hep C, but in general, what damage would you expect to see in someone who has had the virus for 20 years (and who was unaware of the fact and hence drinking alcohol during that time). I have not had a biopsy but have been successful with treatment (nearly a year now!) but I'm still anxious about the state of my liver
A. The chance of someone developing cirrhosis within 20 years of infection is quite low (less than 20%). Your doctor should be able to look at your blood tests and give you a good idea of whether or not you have advanced cirrhosis. If you have now cleared the virus there is a very good chance that your liver will recover so I would not be unduly worried.
Speed of progression of HCV
Q. I developed cirrhosis 18 years after my exposure to HCV. In your experience is there any difference in the speed with which HCV develops or the severity of damage it causes to the liver between the different methods of infection?
A. It is clear that some people are 'fast fibrosers' and others are 'slow fibrosers' and, sadly, you seem to be one of the fast group. We believe that the mode of infection doesn't affect the rate of fibrosis, although this is still a little controversial
Stress and disease progression
Q. Is there any research evidence that stress and pressure (e.g. at work) can accelerate disease progression of hep C?
A. There is no evidence to show that stress makes HCV worse but there is no doubt that stress exacerbates many diseases and it certainly makes the non-hepatic effects of HCV much harder to deal with. I am sure that reducing stress levels is generally beneficial but whether it makes a huge difference to the speed with which the liver gets damaged is not known I suspect that it will not have a major effect.
Questions about Treatment
Interferon - Maintenance therapy
Q. I have relapsed after 3 treatments; one non-peg, one peg Schering Plough, and now Roches co-peg. Each time I go negative by 12 weeks, am negative at end of treatment but the virus comes back (this time 95,000) within 6 weeks of stopping the 6-monthly therapies (I am genotype 3 and finished my last treatment in November 2004). My hospital has told me they do not do maintenance therapy. Does anyone in UK?
A. At present maintenance therapy is not funded in the UK and, since we don't yet know whether it works or not it is hard to criticize hospitals for not funding it. When the trials are completed and we know whether it does or does not work the position will obviously be very different. However at present a few consultants do prescribe 'unauthorised' maintenance therapy in particular cases so it would certainly be worth discussing this with your doctor. In your case I agree that your very good response whilst on therapy does seem to suggest that you might benefit from therapy so I am sure that it is worth raising the issue with your treating physician.
Length of treatment - Genotype 3
Q. I am currently under treatment for hep C (Pegasys plus ribavirin) I have genotype 3 and had a starting viral load of 9,500. While I am experiencing minimal side effects from the treatment I am finding it emotionally incredibly hard, I do not trust the treatment and am not convinced that it is fully understood by the medical profession (especially out here in Norfolk). My views are no doubt colored by the fact that I got hep C from a haemophilia treatment.
I have done loads of my own research and am seriously considering reducing the duration of my treatment to 14 weeks, as suggested by a study done by Dalgard (http://www.hivandhepatitis.com/hep_c/news/2004/112904_a.html)
This study found that 78% of patients with genotype 2 and 3 cleared the virus at week 4; this group stopped treatment at week 14 and had a SVR success rate of 90%. I have had the results of a week 4 PCR which I paid for privately and that found that the virus was undetectable. To my thinking there are people who see a 2 log drop at week 12 that is not as low as my starting level and they still manage to clear the virus.
I realise that you are bound by the NICE guidelines but would be interested to hear your thoughts on this approach.
A. You are right that there is one very good study showing that some patients with genotype 3 achieve an SVR after 14 weeks of therapy. Trials to look at this issue are in progress and I am sure that they will show that some patients do not need more than 14 weeks. The problem is which patients will need 14 weeks and which will need 24 weeks is still not known (the 4 week PCR rule applied in the Norwegian study is a very good first step but the trial was relatively small). If you are finding therapy very hard and have good prognostic factors (i.e. you have low level viraemia at the start, are young, don't have cirrhosis and don't drink on therapy) then I think it is worth considering early cessation.
Genotype 1A success rates
Q. I got infected with hep C from contaminated factor 8 in 1982, I have chronic active hep C genotype 1a. I wanted to go on interferon treatment. I know genotype 1a has a poor success rate. Do you know of anyone with this genotype type who has cleared the virus?
A. There is good news here - many patients (probably around 40-50%) with genotype 1a will respond to therapy so it is definitely worth considering therapy.
Treatment side effects - culumative?
Q. I have had hep C for about 25 years, diagnosed a year ago. I am in my first week of treatment, and following all the dire warnings of how lousy I would feel, I am amazed that I feel fine, if a little weak. Are the side effects cumulative over time?
A. The side effects normally build up over the first few weeks and then stabilise. However some patients (around 10-20% in my experience) don't ever get bad side effects. It sounds as if you may be one of the lucky ones and I hope that this continues.
Treatment - alcohol/opiate use
Q. I am due to see a consultant soon with a view to starting interferon treatment. My problem is alcohol use, I have cut down to no alcohol use in the week but I still look forward to a hit at the weekend. I prefer using opiates, which I think would be a healthier option for me but I am reluctant to go back to facing the problems of buying illegal drugs. Is there any service in the NHS that would prescribe opiates to help people with hep C who want to avoid alcohol?
A. You make an interesting point - the evidence suggests that alcohol use (legal) reduces response rates whereas opiate use (illegal) may not affect response rates (although the evidence here is rather weak). I therefore sympathise with your dilemma. The solution to your problem may be to consider a methadone script to provide you with legal, safe opiates under supervision whilst you are on therapy and I suggest that you discuss this with your consultant who may be willing to refer you to an appropriate methadone prescriber. You should be aware that very few hepatologists are licensed to prescribe methadone so you may have to see two doctors - one for your methadone and one for your HCV therapy.
Treatment non responder
Q. Once there is permanent damage to the liver in the form of cirrhosis is there any benefit to be gained from trying new treatments for a three time non responder?
A. As far as other treatments go I am afraid that the chance of a response in a 3 times non-responder is very low and, at present, there are no novel treatments that might help you. You should ensure that you are followed up with regular ultrasound scans and endoscopy tests to detect any problems that may develop and let us hope some new treatments come along soon that will help.
Post transplant treatment
Q. A friend with HCV who had a transplant and was reinfected was put on 1st treatment trial but had to come off treatment 1 month early as it interfered with the rejection drugs. Was he the odd one out or is this the case overall.
A. Interferon can cause transplanted kidneys to reject and there is concern that it might make the body reject a transplanted liver. Most of the studies suggest that Interferon probably does not cause rejection in patients with a liver transplant but most doctors are very anxious about the effects of stimulating the immune system and would probably stop therapy if there was any suggestion of rejection. Hence most patients with a liver transplant probably will not have a problem with rejection but a few may do so and the doctors looking after the patient will want to monitor the situation very closely and may decide to withdraw therapy if it looks as if the treatment may lead to problems.
Clear - still infectious?
Q. When clear are you still infectious? Lots of people I know still debate this issue, no clear response is given. What is the very important answer to this?
A. This is a rather contentious issue. Until very recently we used to say that people who had a 'sustained response' were not infectious and were cured. However some very recent research suggests that there may be very very small amounts of virus that persist for many years. This is perhaps not very surprising as we can often find traces of viruses in the body many years after infection and they don't seem to do any harm. My own view is that following successful treatment the chance of you infecting someone is virtually nil and I know of no cases where a person who has responded to therapy has gone on to infect someone else. As always we need to be aware that new information is coming in all the time and the position may change in the future but I would certainly be very surprised if a treatment responder did infect another person
Questions about Tests
Biopsy results standard scale?
Q. Can you tell me if there is a standard, numerical scale used by all hospitals in the UK to measure the stage of liver damage found through biopsy. I know that inflammation is assessed separately. I was told only that I had 'quite a lot' of fibrosis. Could this mean cirrhosis? My consultant is a bit vague sometimes.
A. At the moment there is no standard scoring system and everyone uses their own favorite scheme, which does make it hard to understand what is going on. The UK Liver pathologists are trying to establish a uniform system and, hopefully, in the future things will be a little easier and less confusing.
I think that you need to ask your consultant what he or she means by ' a lot of fibrosis' as this is not terribly informative and you are right to try and find out exactly what is going on so that you can make decisions about your therapy based on proper understanding of what is happening to your liver.
Q. It takes 6 months to get a liver ultrasound at our local hospital. I have been told it is unlikely I will be given 6-monthly ultrasounds, and because I had an endoscopy which showed no varices 2 years ago I think it will be difficult to get that as part of a monitoring programme. I have not been physically examined for ascites for 3 years is this necessary or would ascites show up on an ultrasound.
I suppose no varices and portal blood flow normal means compensated cirrhosis but I am worried that these things may deteriorate how can I get my consultant to put me on a regular maintenance programme? If he wont, can I ask to be referred for monitoring elsewhere? (Maybe Addenbrookes?) Also my Alpha Feto Protein is always the highest it can go without coming out of the normal range i.e. around 9.8 and I have a slightly enlarged spleen - would these things bolster my case for ultrasounds? I do not see my consultant until June and even if he does agree to an ultrasound it will be December before I get one.
A. Most consultants agree that 4-6 monthly ultrasound scans are very helpful in the early identification of liver tumors and most consultants ensure that they are performed. It sounds as if your trust has problems with performing ultrasound scans and therefore it may be worth discussing referral to an alternative liver unit which has the facilities to provide the treatment that you may need.
Q. I was wondering how easy it is to get tested for type II cryoglobulinemia. Can my GP do it? I understand the blood has to stay warm, so has to go through an unusual procedure to get to the labs. I understand this can be secondary to hep C, and appears to be becoming diagnosed with more frequency.
A. The test for cryoglobulins is very difficult - the blood must be kept at 37 degrees centigrade until processed and this means that the test usually has to be done in a hospital where the lab is near by.
Cryoglobulinaemia is very common in HCV but, fortunately it is normally at a low level and does not cause problems. A very few patients get large amounts of cryoglobulin and develop some very unpleasant side effects. If you don't have the cryoglobulin associated symptoms it is normally not necessary to be tested for cryoglobulins
Questions about Symptoms
Q. Would you help me to understand why, although pain shouldn't be felt in the liver, a few people with HCV+ do experience sometimes invalidating pain?
A. I agree that some patients with HCV do experience pain over the liver and no one really knows why. My own view is that it is probably due to local inflammation that catches one of the nerves that surround the liver but I don't really know why some people have problems and others don't. It is worth noting that sometimes the pain persists for many months after successful treatment so don't be alarmed if your symptoms persist even after eradication of the virus.
Q. I have had a problem with varices in the past which are currently controlled with medication. Even if a course of treatment has little success in reducing the levels of the HCV does it have any positive effects on a liver that has already progress to cirrhosis?
A. There is evidence that 'unsuccessful' therapy reduces the rate of disease progression and may help to prevent the development of liver cancer so the answer is 'yes' the therapy has probably helped a little.
Eye cysts HCV related?
Q. I have had lumps (cysts) on my eyelids and my eyes feel dry a lot of the time (both on and off treatment) - one had to be removed the other got infected and burst and I had 3 weeks of antibiotics and healed itself - I can feel the beginning of one now - I also get cold sores, herpes a lot - are these linked to hep C as I have another friend who has same thing and she is also HCV +.
A. I suspect that your cysts are probably not related to HCV - some people do seem to get cysts and others don't and it is probably not HCV related. On the other hand some people with HCV do seem to get more cold sores that you might expect so it is possible that this is linked to the infection, however we don't really know for sure.
Sorry to be slightly vague here but the answer, I am afraid, is that we don't know enough about this virus and we need to do a lot more research.
Weight loss and liver disease
Q. Why does someone with liver disease lose weight involuntarily, even though their appetite may be very good, they take care of themselves very well and the disease not too bad?
A. Weight loss with mild liver disease and a good appetite is unusual and unlikely to be directly due to HCV. I think that you should discuss this with your doctor as there may be another cause for your weight loss - for example thyroid problems are common in HCV and I think that it would be wise to have your thyroid gland checked out.
Questions about Trials and Research
Treatment - trials in the UK?
Q. I was wondering if you know what trials and/or studies are taking place in this country at the moment, or will in the near future. I dont necessarily mean solely with interferon based drugs. I have been watching early phase studies with the inhibitor family (protease and polymerase mostly) - all overseas.
A. Unfortunately the UK is not a big prescriber of anti HCV drugs so the drug companies tend not to perform trials in the UK. Hence most of the major trials don't include many UK centers. At present I am not aware of any major trials of new products that are under way in the UK but there are a few 'local trials' looking at subtle modifications to the current treatment regimes. The message here, I am afraid, is that until the UK government wakes up to the problems of HCV in the UK we are unlikely to be used as a major recruiter to trials of innovative new therapies.
Thank you for your answer. Perhaps if you hear or know of any that may occur, you could let the people at the Trust know, so they can post it on their website... there is also a dearth of places one can go to obtain information like this.
Thanks - this is a very good suggestion and I will let the trust know of any trials that I come across and I am sure that they will ensure that they are placed on the web site
Q. I am curious to know if you have any positive indications on the current trials of Chinese herbal medicine that would be of interest to those who didnt respond to combination treatment?
A. A small number of herbal trials have been completed but have, so far, not produced definite evidence of benefit. We are running a herbal trial at The Royal London at present and we hope to have results in April of this year. Hence, at present, the jury is still out on the value of herbal treatments and, hopefully, we will have some definitive information later this year.
Research worth checking out?
Q. Japanese research - It is not clear how vitamin K may prevent liver cancer but previous findings have indicated that vitamin K2 may play a role in controlling cell growth, noted the researchers. They concluded that there is a possible role for vitamin K2 in the prevention of hepatocellular carcinoma in women with viral cirrhosis.
German research - In the other study, "unconventional therapy" where an extract of mistletoe and green tomatoes wiped out the virus in nearly half of patients for whom standard interferon therapy had failed. Matthes tells WebMD.
"We used a whole extract of mistletoe, which stimulates the immune system" to fight off the virus, he says. "And green tomatoes contain a key enzyme called caspase-8 that stimulates cell suicide."
Are these clinical trials and researches ever followed up? - are they worth looking into in your opinion and if so how?
A. There are a lot of 'promising' reports that come out and then, sadly, disappear. You mention a couple of interesting reports that don't seem to have been followed up (yet) and I don't know whether anything will come of these or not.
In general I believe that promising reports are always followed up (usually by the team who made the observation) so my own view is that it is worth waiting for the follow up to determine whether this is the next big thing or just another dud. Let us hope that one of these is for real and makes it onto the market.
Question about Awareness
Hepatitis C awareness
Q. Do you feel that more needs to be done about awareness- raising around hcv?
A. YES - I think that the National Awareness Campaign was an extraordinary non-event and has had very little impact. I continue to see patients on my ward who are admitted with end stage liver disease and the tragedy is that, if identified earlier many of them could have been treated successfully. Hence I am very keen to increase awareness of this disease and it is very important that we do all we can to improve awareness both locally and nationally. If you want to help raise awareness perhaps you should think of contacting your local HCV group or the Hepatitis C Trust which has a patients association you can join.