Geno 3 Post Treatment
Q. I am now 2 1/2 years post treatment following 24 year infection with geno 3. It was successful and for that I am really grateful. However, before the treatment I felt well, had lots of energy etc. Now I am tired before I even get out of bed in the morning, I sleep really badly, maybe 4 - 5 hours a night at best - and that is usually interrupted. I look and feel like I've aged considerably despite eating a mostly healthy diet and generally taking care of myself.
I also still get nagging pains/discomfort in my liver occasionally and my limbs often feel really heavy and achy. Do you know of other patients who feel like this after this length of time - do you think it is connected with liver damage or do you think it is as a result of the treatment? All my liver tests are fine but I never had a biopsy.
A. A minority of patients do seem to get quite severe post treatment symptoms and continue to feel unwell even when the virus has been cleared. However this is very unusual and most people feel much better after clearing the virus. I think that it is always dangerous to assume that your symptoms are due to the hep C that you once had and I would suggest that you get a full assessment by your GP. It will be important to check your thyroid function tests.
I hope that your GP can help you to find an explanation for your symptoms.
Q. I have had my thyroid checked, and diabetes, cholesterol, LFTs, iron etc etc and all are normal - my GP is at a loss. I personally do feel it is connected with the treatment though I appreciate it is an area there is not much knowledge about - perhaps patients should continue to be monitored following their SVR results to see what pans out?
A. I am sorry that we have not been able to identify a cause for your problems. We certainly don't know enough about what happens post therapy but a 'post viral fatigue syndrome' is certainly a possibility. I am afraid that I am not going to be able to offer you a solution here and I agree that we do need more research.
On Treatment bad reaction to ribavirin
Q. After 25 weeks of treatment my relative was told to stop the Rebetol (Ribavirin) immediately due to anaemia but to carry on with the weekly injection of Interferon. He is very ill and weak and I am very concerned. Has weekly blood tests. Geno type 1a. Any advice please.
A. Severe reactions like this are uncommon but sadly quite a number of people do find therapy very very hard. I would suggest that your friend discusses the problems with his treating doctor or hepatitis nurse. Sometimes therapy with antidepressants helps people who are struggling with therapy and, occasionally, dose reductions help. I think that it is important to chat things over with whoever is treating your relative - there are often things that can be done to help
Treatment side effects
Q. I am a haemophiliac, with HCV, and have had treatment 3 times. The side effects have always been hard to suffer. The first time I went the entire course feeling really ill all the time. The last time I had to stop when it was discovered I had drug induced Fibrosis of the lung. I have two questions, will the fibrosis clear or get worse. Secondly as I can no longer be treated with interferon, what are my alternatives?
A. I am sorry that you have had such problems. Pulmonary fibrosis is a very very rare complication and we do not really know enough about it to know the natural history of this rare complication.
Sadly you are right that you should not receive interferon based therapies in the future.
However for patients with genotype 1 HCV there are a number of new, non interferon based therapies that are being tested and it seems likely that within the next few years there will be some alternatives. Sadly these drugs are still at an early stage of development so it may take many years before they are widely available - my guess is that they will become available within the next decade. I am sorry not to be more helpful.
Post treatment difficulties
Q. I have just completed the 6mth of interferon treatment and now I am baffling the doctors with my acute breathing difficulties, I have been passed from pillar to post and back again, told that I am anxious etc etc, I am a single parent and have coped with the treatment!
Symptoms - unable to gather a deep breath, swallowing difficulty, swellings and skin discolourations, tingling and numb hands, I have had lots of blood tests and lung function test and awaiting results, I spoke to someone at the hep c help desk who suggested it could be "!Rhinitis" Please help diagnose me as I am desperate to get better and not be ignored by the medical profession, who bullied me into this treatment. I caught Hep C from a blood transfusion, they did not tell me that there would be post treatment side effects.
A. I am sorry that you are having problems. Your symptoms do not sound typical of interferon induced breathing problems (which is good news!) but clearly you are having problems and need some help. I suggest that you ask your GP for a referral to a chest physician and I hope that a good chest physician will be able to help you overcome your problems.
Access to liver specialist
Q. Just like to ask when a person with hep c is entitled to gain access to a liver specialist. I have had hep c since 1982, yet I have never been referred to a specialist in liver diseases.
A. Every NHS patient has the right to a second opinion and I would suggest that you ask your GP for a referral to a doctor with an interest in liver problems. This need not necessarily be a hepatologist as some gastroenterologists and infectious disease specialists are knowledgeable about viral hepatitis but I think that you should exercise your right to see a specialist with an interest in the disease from which you are suffering.
On treatment low platelets sore bleeding gums
Q. I am having problems with very low blood platelet counts, as a result of the Peginterferon injections. One of the side effects are very sore and bleeding gums, which make it difficult to eat anything with hard skin or sharp edges, bleeding occurs otherwise. Is there any self help treatment that I can use to counter this effect?
A. I am sorry that you are having problems. It is obviously difficult to comment on your specific case but, in general, gum problems are common and often made worse by low platelet counts. It might be worth seeing your dentist to see if there is anything that can be done to improve your gum problems. If the bleeding becomes a significant problem then you may need to think about a reduction in the dose of your drugs. I think that this is something that you should discuss with your treating doctors.
Sadly low platelet counts on therapy are very difficult to correct and a reduction in drug dose is often the only way to improve the situation.
On treatment blood test results
Q. I have a question about blood test results on tx. Personally I am now into my 7th week of a potential 48. My haemoglobin has gradually gone down from 13.1 to 11.4 at four weeks; WBC started at 5.14 and 1.86 at 4 weeks; and Neutrophils down from 3.3 to 0.88 at 4 weeks. I have an idea of what is going on but could you please explain why these drops occur so I am clearer about this. Also is there anything in particular you could recommend to support our blood and side effects on tx.
A. In general the low haemoglobin is due to the ribavirin which damages the red blood cells and the low white cell count and platelet count is due to the interferon.
Low haemoglobin levels can be treated by reducing the dose of ribavirin. However most doctors don't worry too much about haemoglobin counts that are above 10 - it is unusual to get severe problems above this level and it is best to avoid dose reductions in ribavirin as this can reduce the chance of a response to therapy.
The changes in the white cells and platelet counts are usually not very significant and we normally only get concerned if the platelet count drops very low (such as below 50) or the neutrophil count falls below 500. However if your counts are falling it is important to have regular check ups to ensure that the levels are not decreasing to a dangerous level. If the counts do fall to a dangerous level then a reduction in the dose of interferon may be needed.
Genotype 3 - relapse rates
Q. Hi prof Foster, thanks very much for doing this chat. Ive noticed on various forums that there appears to be a highish rate of relapses with Geno 3a. Do you have an opinion on 24 vs 48 weeks treatment for this Geno.Thanks
A. It s a very good question and I do think that we have overestimated response rates with this genotype - I certainly don't think that it is very easy to treat. The question is whether or not we can improve response rates by increasing the duration of therapy. At the moment we are planning a UK wide study to try and answer this question - we plan to compare 24 and 48 weeks therapy in patients with advanced fibrosis and this will tell us whether or not longer treatment is better or not. The trial is due to start later this year so in a couple of years I may be able to give you a proper answer, but sadly at the moment I can not tell you whether an extra 6 months therapy is worth it or not.
Geno 4 - chances of treatment success
Q. Can you please tell me what the chances are of treatment being successful for genotype 4a. I was told that there is a 70% chance of treatment working but I read a study from Egypt yesterday that suggests its more like 50%. I am half way through 48 weeks of treatment, the virus was not detectable at 12 weeks & I had been infected for seven and a half years before starting treatment.
A. Genotype 4 is difficult because there have been no large scale trials. However it does seem that in Spanish patients the response rates are quite good (near to 70%) but in Egyptian patients the response rates are lower (around 50%). We dont know whether this is because there is a different viral strain in Spain or whether Spaniards are better at responding than Egyptians. Hence I am afraid that I don't think we can give you a good estimate of your own personal chances of a response but we will keep our fingers crossed and hope that you respond like a Spaniard!
Hep c classes for newly diagnosed patients
Q. There has been one suggestion that I have seen recently which might help.
The idea is to run Hep C classes for patients. Most of the early clinic time seems to be spent answering the same questions, and the idea of the classes is to educate patients so that they have all the basic information before they meet their consultant. It could save a lot of time and resources.
A. I agree that this is a good idea. I know that The Royal Free have recently introduced such a scheme and we are all watching with interest to see if it is popular with patients. If patients like it then I think that a lot of units (including my own) will introduce this sort of scheme.
Q. Having gone through peg interferon treatment which was unsuccessful. I have been told to wait for a liver transplant. At what stage do I have to be at before I will get assessed by a liver transplant team? How ill will I have to be to be put on a list for transplant? How many people receive a transplant compared to how many people who don't?
A. In general your liver has to be very badly damaged to need a transplant and you are likely to be referred to a transplant unit when your doctors think that your liver has declined to a level at which liver failure is likely. At the moment in the UK most people who need a transplant get one in time but the demand for organs is growing and we all need to do all we can to encourage donation so that we can continue to meet the increasing demands.
Q. I've just "partially responded" to a course of Peg-Ifn/Riba", i.e. "cleared" the virus whilst under treatment only for it to re-appear when treatment concluded. First off, thanks Prof Foster (and Opal) for the excellent quality of treatment and support.
I've had to move away from the London area (way oop North), but wondered what I should be asking for or how long I will have to wait for the next try at eliminating this infernal virus (Genotype 1)?
And how far away are effective protease and polymerase inhibitors for HCV? Has anyone found one that doesnt kill rats yet?
A. The good news is that for patients with genotype 1 there are a number of very promising new drugs in early clinical trials. As you know sometimes a promising drug unexpectedly fails but there are around half a dozen promising drugs in early clinical trials at the moment. My guess is that at least one of these will work out and I would bet that in 5 years we will have some new treatment choices. However I suspect that it will take the full 5 years to bring these new drugs into widespread use.
In the meantime it is important to stay healthy, avoid excessive alcohol and eat sensibly. For most patients with genotype 1 I think that the drugs will arrive in time. However it is likely that some of the drugs will not be as effective for other genotypes so patients with genotype 2, 3 and 4 may have to wait a little longer.
Q. Hi there! I know this is probably a stupid question, but I have hep C and was treated last summer with ribavirin/interferon. Despite being geno type 3, the treatment was not successful and as I understand it there is nothing more (medically) you doctors can do for me. However, I know there is a lot of research going on, particularly in the USA - so
- Is there anything more I can do for myself now, and
- Are new treatments on the horizon or is this something for the far distant future? ooooooh, and
- I expect you've been asked this loads of times, but does taking Milk Thistle help? Or at least, not hurt?!?! Thanks for your time to get involved with this discussion - sorry I couldn't be online!
A. Please have a look at my answer to the previous question that answers most of your questions. There are some good drugs in development but some of them only work for genotype 1. Let us hope that one of the drugs that works in different genotypes will turn out to be the one that works.
As far as milk thistle goes I agree that it probably does no harm but whether it does any good or not is still not clear.
Counselling for people with hep c
Q. Many people with hep C who I know have suffered great psychological difficulties (mood swings, relationship problems, depression etc); however, there is a huge lack of psychological support available through the NHS.
Clearly, specialist nurses do a great job in this area, but they are not professional counsellors, nor do they have time to meet the needs of some individuals. Support groups in some areas (not where I live) do a fine job, but depend on committed individuals as volunteers - and again are untrained.
Do you feel that counselling should be made available as needed via the NHS for people with Hep C - either by funding and training support groups or through other hospital departments, or do you feel that current provision is adequate?
A. I think that every NHS patient should have access to the support that they need. This will differ between different patients - some people need little support and some need a lot of help. I believe that we should be able to provide everyone with the counselling and psycho-social support that they need to stay well. Sadly in too many areas the funding for these important additional services is not available.
Chances of relapse
Q. We have recently received wonderful news that my husband has achieved 6 month post treatment SVR. However there still remains a small amount of concern (insurance, medical records, etc) as there does not seem to be a consensus view on the rate of relapse after this indicator of a successful treatment. I have seen quoted percentages as high as a 3%, down to below 1%. I would be very interested to hear your thinking and experience on how many people relapse after 6 month SVR.
A. I am glad that your husband has responded. The good news is that the chance of a relapse is very small - so small that no one has really been able to measure it accurately (which is why everyone quotes different figures). I have to say that so far (touching wood here!) I have seen only one patient who was PCR negative after 6 months and then relapsed. So after 10 years treating patients I have only seen one late relapser. Hence I personally think that it is very rare and, in fact, I discharge people from the clinic if they have a sustained response (but I do suggest that they get their LFTs measured by their GP every year)
Q. I've just completed 6 months combo therapy (geno 3a), and apart from waiting for my 3 & 6 month pcr, it seems like you're just left in limbo re after effects, both mental and physical. There doesn't seem to be any sort of aftercare available, and this issue is being raised by many people.
I expect lack of funding is at the root of the problem. I would like to ask you for your views on this matter.
A. Again I think that in a perfect world everyone would get the support that they need but, in the current funding shortfall, I fear that 'additional services' such as you describe are unlikely to be supported. Hence I strongly support your suggestion although I suspect that it is unlikely to receive the financial support that is required to implement it.
Q. Hi there, do you have any views on Fibrotest?
And also do most/few of your patients manage something approximating normal life while on treatment?
Finally, is 50% an accurate figure for geno type 1's to clear with treatment?
As you can see, I am considering my options!
A. I am not convinced by fibrotest - it is quite good at identifying very bad and very good disease (but most doctors can do that anyway!) but it doesn't seem very accurate at distinguishing mild from moderate and severe disease, which is what we all want to know
I think most patients do manage a reasonable lifestyle on therapy - most of my patients do manage to carry on working but they do find life a bit of a struggle. Hence it is very person to person dependent - some people have no problems others have real problems. It is perhaps worth remembering that you can always stop if the side effects are worse than you expect.
I think that 50% is a reasonable figure - however the older you are the less likely you are to respond.
Slow responder chances of SVR?
Q. I am geno 1b, low viral load, female, 40, 62kg, stage 0/1, grade 2 (Ishak - does this go to 4, 6 or 18?). I have probably had the virus for over 20 years.
I am on pegintron 100mcg, and Rebetol 800 a day, 100% compliance. My 4 week PCR showed I cleared over 70% of viral load, my 12 week PCR showed that I have now cleared 98% of the starting viral load, not quite the 2 log, what are my chances of SVR, am I just a slow responder?
A. I am afraid that you are responding rather slowly which makes a sustained response a little less likely. However a proportion of patients who are slow responders do go on to achieve a cure so I would not give up hope at this stage. I am afraid that I can not really give you a clear estimate of your chances of a response but I would guess that it is still 50:50. I do hope that you are lucky.
Q. Can the combination treatment cause problems with breathing, i.e. oesophagus/diaphram tightness?
I am having an attack now and my friend is typing, I have tingling in both hands, especially the left, cold feet.
A. Therapy certainly can cause a feeling of breathlessness as the anaemia can make you feel short of air. However attacks with tingling in the hands and feet can have another cause and I think it would be wise to discuss your symptoms with your doctors
Post treatment feeling ill
Q. My husband was treated for hep c almost 3 years ago now with peg interferon and the capsules. This was a 6 month tx and he was very poorly off the tx. He has had several negative tests since and as far as the authorities are concerned he is clear of hep c. However he has been vomiting regularly all this time and is permanently exhausted. Thyroid, diabetes etc have all been ruled out so we are just in a state of acceptance that this is his life from now on. As he is on a prescription for methadone ampoules that he takes every day I am convinced they think this is the cause although he has been a stable user of methadone for years pre and post treatment.
I would be very grateful if the professor could give his opinion on whether the treatment could have left my husband with permanent health problems. My husband is 48yrs old.
A. Some people do find that they feel unwell post treatment but it is always dangerous to assume that hep C is the cause of all of your problems. Certainly I would be very concerned about your husbands vomiting - this is very unusual and I would suggest that you ask to see a gastroenterologist so that tests can be done to find out why he is so unwell.
I do hope that you can resolve this and that your husband improves - it sounds as if he is having a hard time at the moment.
Q. Dr. Foster what is the best to do to manage the pain caused by cryoglobulinemia, such as stiffness in the fingers and toes, spine, hips, it is moving through the body. My GP says he knows nothing about it and when I phoned Southampton they sent me back to my GP...
Is it possible to treat big cysts [10 cm] on the liver? One of them is pressing into my back...they said, there is no sense to suck it as it will come back again...
A. As far as your cyst is concerned, in general sucking liver cysts dry is unlikely to be successful and the only treatment that works is surgical removal. I would be very reluctant to remove a cyst in someone with HCV (you should try and protect your liver as much as you can) but if it is causing severe pain then this may need to be considered.
There are lots of therapies that might help your cryos and I would suggest that you ask to be referred to your local liver unit as antiviral therapy may help your cryos.
Q. Prior to being diagnosed with hep C, I had a range of issues relating to joints - I had 2 arthroscopies on one knee, which showed minor issues for the problems it caused, was diagnosed with carpal tunnel syndrome and had negative x-rays for a cervical rib (none evident).
I am now 8 months into treatment and the carpal tunnel issue seems to have disappeared. I have only minor problems with my knee, but major problems with my left shoulder, especially when walking.
It has been suggested that these issues may alleviate after treatment. Is this fairly typical?
A. I agree - a lot of people with HCV do get joint problems and very often these improve with successful treatment. I hope that your improvement continues.
Livers grown from cells?
Q. Giving the recent success at Wake Forest with bladders, do you see a time when livers will be offered grown from patients own cells? And if so when?
I have failed treatment response to genotype 1A, chronic sclerosis, and possibly been infected 30 years.
A. I am sure that in the future we will be able to grow livers but the liver is a very complex organ so I think that it will be many years before we are successful.
How much alcohol is ok to drink?
Q. I am a 24 yr old female and I was diagnosed with Hep C about 8 yrs ago which I almost certainly caught through sharing needles when I was a heroin addict (which I have been clean from for 4yrs). I am now a mother and hold down a full time job and life is great, but I enjoy a drink at the weekends in with my friends and sometimes I can drink 1 and a half bottles of white wine in one night. I usually only drink on one night at the weekend and never during the week but I am worried that I am causing more damage to my liver. I haven't been for a check up for a few years as have been so busy but I have started taking milk thistle (is this any good?) I don't take any drugs at all including prescription drugs and don't even touch a paracetomol unless absolutely necessary. Do you think it is safe to have a drink one night a week or am I causing loads of damage?
A. In general it is best to avoid alcohol completely. However a small amount of alcohol is probably not going to do a great deal of harm, but a bottle and a half a week is perhaps a little more than is wise and I would suggest that you think about reducing your consumption a little.
Geno 3 failed treatment
Q. I have genotype 3a. I finished 24 weeks combo in January 2005, was clear at end of treatment but failed to sustain at 6 months. I have early cirrhosis.
During a previous live chat Prof Dusheiko suggested that a 48 week treatment could provide a SVR since I relapsed. I have been told that NICE guidelines do not support retreatment for peg/riba patients. Do you support Prof Dusheiko's observation?
Will your trial include retreaters?
I have also been told that when liver function tests are done, viral load tests are unnecessary since there is no correlation between viral load and rate of disease progression. Do you agree?
Finally a number of forums suggest that 4 and 12 week pcrs should be done for 3a tx. If clear then proceed with 24 weeks, if not then progress to 48 weeks. This appears to be practiced in the USA and Germany. Any thoughts?
A. At present we don't know the best way to treat non-responders and no one knows whether a further course of therapy for 48 weeks will be effective or not. Hence it is not currently recommended but it is something that might be worth trying (particularly in patients with advanced fibrosis).
Our current trial is only for treatment naive patients I am afraid. I agree that there is no correlation between viral load and disease progression.
I think that your suggestions about 4 and 12 week viral load testing being used to determine whether to go for 24 or 48 weeks therapy is an interesting idea but, at the moment there is no evidence to support this so most units will restrict therapy to 24 weeks.
Geno 1 - failed to respond to treatment
Q. Before ribavirin was introduced I failed to respond to interferon alpha, not pegylated. Since then I have had chronic cirrhosis confirmed, two biopsies, repeated ultrasound, bloods etc. I have not shown varices yet by endoscopy and apparently I am maintaining a well compensated liver function.
I have genotype 1a and was infected about 30 years ago. Would you suggest new type interferon and ribavirin to a patient with such history?
A. The evidence is that if you have not responded to standard interferon your chances of responding to pegylated interferon are quite small (perhaps 10-20%). However this is something that you might want to consider and I would certainly suggest that you discuss this with your doctors.
Geno 2 on treatment
Q. I am lucky to have genotype 2b (as opposed to genotype 1) and am at present on Pegasys/Copegus treatment and I would like to ask a few questions:
- If the results of a PCR blood test are negative at 6 weeks how long minimum would you recommend that the treatment continue for to ensure SVR?
- My results of a recent liver biopsy showed necro inflammation stage 7/8 what does this mean and is this together with the stage 3 fibrosis found likely to reverse with treatment?
- Is there a treatment for Fibromyalgia and is Fibromyalgia likely to continue after treatment of the hep c is completed. I have had this before and during treatment.
- Could Hep C cause arthritis?
- Will my liver ever fully regenerate once treatment is completed and SVR attained?
- Is it necessary to give up drinking completely (as I did two years ago) once treatment is completed and SVR achieved?
A. There is still debate about how long to treat people with genotype 2 - for many patients 12-16 weeks may be enough but it is still not clear which patients need shorter courses. Hence I would recommend aiming for 24 weeks but perhaps stopping early if you have side effects
Necroinflammation is the amount of inflammation in the liver and a score of 4-9 out of 18 is typical in HCV. Your fibrosis is likely to reverse if the virus is eliminated.
Fibromyalgia is very disabling and is very difficult to treat.
HCV can cause arthritis.
We do believe that the liver will recover a lot if you are a responder but we don't know whether or not it will go back to normal.