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3 Treatments: Interferon, Peg, Infergen w/Ribavirin and no luck
My husband was just told by Dr. that after 9 mos. on daily Infergen/Ribavirin tx, his labs dropped drastically and he cannot continue. Viral load is 176,000; down from 5 million.
At first we were shocked and upset since he hasn't missed a treatment, but after having been stopped on two previous txs, we are trying to be positive. Dr. trying to get him in study of non-responders which will be on low Peg. dose forever. Supposedly, since his liver is only stage ll, this will put a "protective coating" around it to keep it at this stage. Has anyone heard of this?
At first we were shocked and upset since he hasn't missed a treatment, but after having been stopped on two previous txs, we are trying to be positive. Dr. trying to get him in study of non-responders which will be on low Peg. dose forever. Supposedly, since his liver is only stage ll, this will put a "protective coating" around it to keep it at this stage. Has anyone heard of this?
Glad to have you guys on our side. Loved the 7 Dwarfs analogy! We are so lucky our 7 kids don't have it and the Dr. said my husband has a better chance of winning the lottery than infecting our grandkids. Thanks and we'll keep you posted.
I hope it works out for you guys. He will have to try it himself to know for sure because it really seems like experience with these treatments seems to vary with each individual. I hope it works out for you both.
He is very lucky to have such a kind, supportive mate helping him through this. It's a real pain and hard to explain to others what it is like other than it stinks! i always think of it like having ALL the 7 dwarfs personalities at once, it makes you Sleepy, Grumpy, Dopey, etc. ;)
Good luck, if you get a chance visit us and let us know how you are doing.
He is very lucky to have such a kind, supportive mate helping him through this. It's a real pain and hard to explain to others what it is like other than it stinks! i always think of it like having ALL the 7 dwarfs personalities at once, it makes you Sleepy, Grumpy, Dopey, etc. ;)
Good luck, if you get a chance visit us and let us know how you are doing.
Thanks so much for the input. You are right; protecting the liver is the name of the game. We are waiting to see if we can get into the study. He thinks Interferon alone would be a breeze after the last Infergen/Riba treatment.
Glad you joined the forum, Welcome. It's always nice to have new people join in.
Waiting on things to come is one option but you run the risk of having his liver damage increase during that time. Remember we do not know when or even IF those drugs will be approved. Everyone is guessing as far as when these drugs will be available or if they will gain approval. There is no set time frame we can verify. If he does the low dose interferon and he feels fine doing it, it can halt further damage and even reverse existing damage. Many promising looking drugs do not clear drug trials and ever gain FDA approval. In addition, newly approved drugs have not had a "track record" yet so they are still not "tried and true" drugs when they hit the market, they are still new drugs. Some drugs gain approval but then are recalled in the first few years due to problems that arise too ( think Vioxx)so please consider all of that.
He might find that a low maintenance dose of interferon causes no symptoms at all. My doctor says that in his practice he finds that low dose interferon is "well tolerated" by his patients and he hears no complaints like he does from those on standard treatment. Interferon has shown that it can halt and even reverse liver damage. Taking a low dose that is not causing him any symptoms but IS suppressing the virus means he is effectively stopping the viral asault on his liver even if he can't eradicate the virus right now. In addition, he could see improvement in his liver damage, it could be reversed a stage or two, which would be ideal. Stage II is certainly better than higher stages, but it is still second stage liver damage,or "moderate" liver damage. Not as bad as "severe" but not ideal either. What are the details of that damage? I'd want to know that, exactly what kind of damage they are talking about.
He could try his doctor's recommendation of low dose interferon and if he finds it difficult to tolerate he can stop and do the "wait and see" thing. If it causes him no symptoms and at the same time is healing his liver damage, that sounds like a win win situation to me. I'd try it in the hopes I could reverse liver damage and at the same time not have my quality of life compromised. Remember if he still has the virus and he doesnt do the treatment with low dose interferon, then he might have symptoms from the Hep C that affect his quality of life, so that is another consideration. It sounds like the Riba is causing him lots of problems now, removing that I imagine will greatly improve how he feels.
My doctor thinks low dose maintenance interferon is a good idea like your doctor does. Let us know what you end up doing.
Waiting on things to come is one option but you run the risk of having his liver damage increase during that time. Remember we do not know when or even IF those drugs will be approved. Everyone is guessing as far as when these drugs will be available or if they will gain approval. There is no set time frame we can verify. If he does the low dose interferon and he feels fine doing it, it can halt further damage and even reverse existing damage. Many promising looking drugs do not clear drug trials and ever gain FDA approval. In addition, newly approved drugs have not had a "track record" yet so they are still not "tried and true" drugs when they hit the market, they are still new drugs. Some drugs gain approval but then are recalled in the first few years due to problems that arise too ( think Vioxx)so please consider all of that.
He might find that a low maintenance dose of interferon causes no symptoms at all. My doctor says that in his practice he finds that low dose interferon is "well tolerated" by his patients and he hears no complaints like he does from those on standard treatment. Interferon has shown that it can halt and even reverse liver damage. Taking a low dose that is not causing him any symptoms but IS suppressing the virus means he is effectively stopping the viral asault on his liver even if he can't eradicate the virus right now. In addition, he could see improvement in his liver damage, it could be reversed a stage or two, which would be ideal. Stage II is certainly better than higher stages, but it is still second stage liver damage,or "moderate" liver damage. Not as bad as "severe" but not ideal either. What are the details of that damage? I'd want to know that, exactly what kind of damage they are talking about.
He could try his doctor's recommendation of low dose interferon and if he finds it difficult to tolerate he can stop and do the "wait and see" thing. If it causes him no symptoms and at the same time is healing his liver damage, that sounds like a win win situation to me. I'd try it in the hopes I could reverse liver damage and at the same time not have my quality of life compromised. Remember if he still has the virus and he doesnt do the treatment with low dose interferon, then he might have symptoms from the Hep C that affect his quality of life, so that is another consideration. It sounds like the Riba is causing him lots of problems now, removing that I imagine will greatly improve how he feels.
My doctor thinks low dose maintenance interferon is a good idea like your doctor does. Let us know what you end up doing.
I looked at the study and it includes Ribavirin which his Dr. said is not in the University of Arizona study. Supposedly, the Peg. dose is so low that there are no side effects. As JimJim said, waiting for one of the newer drugs down the line might be better since my husband's viral load always comes back with a vengeance after each tx which suggests mutation. Since viral load isn't an indication of how your liver will withstand the attack from hepatitis C, I tend to feel waiting would be wiser as sometimes the old saying: "the cure was worse than the disease" pertains to this first generation of hep C patients who are not in stage IV. Forgive my convoluted sentences and thank you so much for kind words and much appreciated input.
I am in the same situation as your husband and after ignoring it all for a year, I found an excellent doctor at a very big hospital who convinced me to wait for a bit before trying maintenance. He was worried about my viral mutation becoming more prevalent than it is already. He also said I can wait a year or so for a couple of new trials coming out that he is very hopeful about.
It is shocking to find out the tx doesn't work and hard to just wait, wait wait for the new drugs, but the more I read about mutation, the more I think my doc is right. If your husband feels decent, doesn't drink, takes care of himself, he ought to find a good infectious doc and ask about mutation and if he has the time to wait. I have much faith there are very good drugs out there, and they are coming our way very soon. Good luck to you.
Willow
It is shocking to find out the tx doesn't work and hard to just wait, wait wait for the new drugs, but the more I read about mutation, the more I think my doc is right. If your husband feels decent, doesn't drink, takes care of himself, he ought to find a good infectious doc and ask about mutation and if he has the time to wait. I have much faith there are very good drugs out there, and they are coming our way very soon. Good luck to you.
Willow
Depending on where you live and insurance issues, etc, you might want to get in touch with either Dr. Afdhal at Havard/Beth Israel in Boston, or Dr. Eugene Schiff in Miami. Both not only run trials, but also have a relatively new non-evasive method of assessing liver damage called Fibroscan. May be helpful in monitoring your husband's liver whether he decides to treat now or wait.
Afdhal contact: http://tinyurl.com/nbavn
Schiff contact: http://www.med.miami.edu/med/hepatology/chief.asp
Afdhal contact: http://tinyurl.com/nbavn
Schiff contact: http://www.med.miami.edu/med/hepatology/chief.asp
Truly sorry about your husband. Sounds like both of you have been through a lot. From what you describe, it sounds like your doctor wants to put him on a mainteance dose of Peg for an indefinite period.
Considering he's only a stage 2, I'd definitely discuss his future treatment options with at least one or two additional liver specialists (hepatologists) before committing to such a long-range program. As you probably know, there are several new drugs in trial Some may be available for non-responders now and some in the near future. You and your husband deserve to explore all options before committing to something so long term.
All the best.
-- Jim
Considering he's only a stage 2, I'd definitely discuss his future treatment options with at least one or two additional liver specialists (hepatologists) before committing to such a long-range program. As you probably know, there are several new drugs in trial Some may be available for non-responders now and some in the near future. You and your husband deserve to explore all options before committing to something so long term.
All the best.
-- Jim
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