Sorry to hear of your troubles. Genotype 4 is prevalent in Egypt; there aren’t too many studies performed on it here in the U.S. My limited understanding is that the treatment response is somewhat similar to genotype 1, but perhaps slightly easier to manage.
What did your previous two treatments consist of?
I would definitely consider a third attempt at treatment, given your options; when decompensation occurs, you will not qualify for additional treatment
A quick thought; have you discussed adding Alinia (nitazoxanide) as an adjunct to the interferon/ribavirin? This has been used in studies in Egypt with some success. Nitazoxanide is currently available and labeled for use against intestinal protozoa; it has significant antiviral properties. You can search for ‘HCV Alinia’ and find studies; or I can look for you, if you like.
There are other drugs currently in late stage clinical trial right now; these are known collectively as ‘protease inhibitor’ drugs. These will also be used adjunctively with the current treatments, but aren’t expected to be available to the public until 2011 some time. I would think your case has enough urgency to warrant treatment now.
Discuss the nitazoxanide with your medical team, and let us know what they say. Good luck, and welcome to the discussion group—
Your doctor is using the Child-Pugh system of cirrhosis measurement which goes A,B,C.
1) What do you mean by 'no response'-do you have any numbers?If you had partial response then that's different.What does your doctor say?
2)Legalon is just another herbal product which will do absolutely nothing
3)Progression takes different time for different people-cirrhosis is a long journey
4) The new drug Telaprevir is effective against genotype 4 and your best hope.Get with a top local hepatologist and prepare to start treatment in 2011 when the drug will be availible.
This was just sent to me by a thoughtful old time member here; it deals with the treatment of decompensated patients, and is in conflict with the statement I made above about decompensation being an absolute contraindication for HCV patients:
(free registration required)
“Conclusion: In decompensated cirrhotic patients, anti-viral therapy with current regimens is feasible and associated with an overall SVR rate of 35.1%. Treatment ought to be pursued among patients who attain an EVR, and maintain a full course and dosage of therapy…”
I think this is an important article; it might turn our perceptions around a little; it did mine :o).
I hope ‘Salah_K finds this thread and can benefit from it—
Thanks for your quick response. I surely can use you advice. My two treatments was in 2004 and 2006 with interferon / ribavirin. Frist time was 6 month completed and virus was still there, 2nd time stoped have way because doctoer sayed there is no use to continue. v. load is 1.1 million now but it was 5.5 million before the treatment.
I am going to use your info to discuss with my hepotologist next week and I will keep you posted.
Thanks again for the info. I really did not know where to go, but thanks to google that I could find you.
God bless you all,
Bill, thanks for posting the link to the Medscape article. But if you read it again, the 35.1% rate of clearance is an overall rate. The rate for genpotype 1 or 4 patients drops down to 16%. I don't know if that rate is worth the problems that cirrhotics have with bone marrow depression, etc.
I don't like writing this and I cannot back it up but I have heard from a few sources that there are some rumblings that Alinia is not living up to the potential that it once thought to have had.
Now..... I'm hearing this about results without any quantification. I can only assume that they are about genotype 1 and pertain to clinical trials in which Alinia was the ONLY adjunct to SOC. It seems to fly in the face of the experiences that we see here but I will note that many people have been successful using that drug but have used a multitude of other therapies and tactics. I believe that some synergistic effects could be at work and I think that in spite of what I have heard Alinia might be worth a try. It could also be that it is more effective on genotype 4's. I believe that has already been shown to be true, although in a smaller study.
I saw in the 2009 EASL liver conference that IV milk thistle had an antiviral effect. They were able to bring a percentage of patients back to undetectable who had a viral breakthrough. At that same liver conference there was a paper presented which showed that SAM-e use in conjunction with SOC improved the effectiveness of TX.
We also see some people here who have increased response rates with SOC. One does not always have the exact same chances of clearing each time one treats.
I guess that I wonder if one was able to incorporate a few of these possible improvements into a treatment, possibly lower ones viral load prior to even treating, perhaps preload with riba and keep as close to full dosing as possible in the first 4-12 weeks if you might be able to get a better response that one had ever had.
We have an member who no longer posts here who attacked the virus with an "everything but the kitchen sink" approach (Cocksparrow) and in spite of the fact that he was a 2 time non-responder he was able to clear by week 4 and now, 24 weeks after starting is still clear.
His case may not translate to yours. He did some extra riba and IFN in the first weeks. I think there is a question due to your cirrhosis what you could tolerate with extra dosing.
I guess that my point is that for some people there is a tipping point at which through adding some new drugs, supplements or therapies one may be able to effect a treatment and increase one chances of clearing. My guess is that you could try a run at treating again and determine where you stood by week 2, 4 and week 12.
Finally, some cirrhotics will benefit from the PI's. They will still experience a more rapid viral decline and some response patterns will allow a 24 week TX, I believe. A person with very early cirrhosis could well wait for the new PI's. You can ask your Dr about that as well. I expect that we could see them in about 18-24 months.
Vertex did a small trial on the geno 4 virus. It was an improvement but I think that Telaprevir is going to be the darling for genotype 1's. It was not effective on genotype 3's and if memory serves it did not have the across the board response it had on geno 4's as it did on geno 1's. If considering this drug (or waiting for it) you might investigate that as well. I'm sorry but my memory on that does not serve me well here but that is my general impression.
I did see that the SVR rate for decompensated cirrhotics was 16%. Although that’s a rather dismal percentage given today’s expectations of 45-50% for non-cirrhotics, it’s still better than the odds given back prior to pegylation, and people were getting in lines to endure that treatment.
It seems to me that given the alternatives, I’d want every chance to beat this. At minimum, this study offers one more option to explore. Keep in mind, the authors of this study were very particular with their inclusion criteria; treatment naïve, etc. The real-world statistics might be lower yet.
I thought it was interesting that decompensated cirrhotics were given the opportunity to treat at all; previously, I thought this was an absolute contraindication.
I hope all is well with you; thanks for the good stuff you contribute in here, by the way :o),
One note of clarification, what I heard on alinia was that it didn't work that well but what I interpreted that to mean was on genotype 1's w/ SOC. I note there were trials ongoing that were not complete evaluating response in both naives and in past non-responders. I don't think the final SVR rates are out for the genotype 1's. It is entirely possible that Alinia may work better on certain genotypes. I suppose it would have been better to hold comment until final data is out. Preliminary data was revealed at EASL2009. -W
Alinia (Geno 4)
Milk Thistle IV "rescue" used on breakthroughs. EASL
Telaprevir on geno 4 (note no final SVR rates)
You are absolutely right. I did Intron A when the chance for SVR was 10%. And I did it for 2 years because my liver enzymes normalized (there was no PCR available at that time). I would have walked through fire to get rid of this disease. Now I guess I'm just a bit gun shy for cirrhotic patients because my last treatment knocked the cr*p out of me. I really thought I wasn't going to make it out of the hospital. It's a very personal decision, isn't it?
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I am disappointed with my discussion with my specialist today. I told him about advice to use Alinia and Telaprevir but he told me that these are not available as an official treatment in Holland. He told me that I have to be patient and wait for new medicine which will be made available in 2011. He did not even accept to give me Legalon as he does not believe in it. He told me to watch out for vat and to keep my weight in a reasonable rang and bla bla bla …
Just for you info. Holland is different from the US. We do not have private clinics or individual GPs. Every one in the Netherlands is expected to be registered in a Health care centre. The in the centre you can choose a doctor who becomes your family doctor and he or she will direct you to a specialist. The create a file which is accessible by all other centres and pharmacies in Holland. So I am suck with these guys and I have no options to switch from one hospital to another because they are all connected and they know exactly my history. For 2nd opinion, or to try to get 3rd attempt treatment, I would have to go to France or Belgium (across the board) and I would have to obtain approval from my health insurance first.
I am not sure if I should go for 3rd attempt and go through the huge paperwork / approvals require or just wait for medicine to available in Holland in 2011. My doctor told me that he is sure that I will be one of the first people to receive the new treatment (protease)?
Thanks for your support and advises
I agree with everything your doctor said.
Wait for Telaprevir in 2011.
Legalon is nonsense.
Your response to interferon is so poor that there is no point is trying the same thing again.
The stuff about your weight is not blah blah blah-it is good advice.
Good luck for the future.
Thanks for your commetns. I will try to have my weight within the range. It is diffecult though because I am always tired and could not do any sport. Even cycling for few minutes. I will give it a try anyway. Thanks once again
I just want to tell you that I totally agree with everything that HCA has told you. And even a small weight loss is helpful. I do understand how hard it is to exercise when we are so tired. I just try to walk a little bit every day.