Aa
anyone a nonresponder?
We went to the doctor on wed. and he said after 80 weeks of interferon/riba and his viral load is still almost 5 million he is a nonresponder. The problem is that since he is a transplant patient he can not be involved in any studies cause the anti reject meds fight against the treatment meds. So here we are playing the waiting game until something gets approved by the fda. The doctor said transplant livers will only last 5 years with a hep c patient so we're 2 years into it. Has anybody been taking off treatment and then put back on an acheived svr? Any help will be appreciated. Thanks ,Ruth
same here Michael, I found pegasys much easier than peg intron, chemisties are all so different
I have seen studies which show an advantage to both drugs Pegasys looks better in one and Peg-Intron better in another. I don't know whether one is more effective than the other. I would guess there is little to no difference in effectiveness between the two.
My experience was that Pegasys was much easier to tolerate than was Peg-Intron. It also appears from the posts here that most of the people who have treated with both found Pegasys to be easier too. My first treatment was with regular interferon (non pegylated), my second was with Peg-Intron and my third was with Pegasys. I do not know whether I could have tolerated 73 weeks of Peg-Intron. I found 73 weeks of Pegasys to be easier than 53 weeks of Peg-Intron.
Without knowing any of the circumstances of your Husband my first impression is that he was/is under-dosed with Ribavirin. When I did 800 mg of ribavirin the second treatment I cleared late - maybe week 35 or 40 - I just can't remember. I was also doing Peg-Intron on that treatment. I doubt that my late clearance was attributable to the Peg-Intron. When I was doing Pegasys and 1000 mg ribavirin I cleared by week 12 and probably at week 11. I have to believe the increased ribavirin dose was responsible for my significantly improved response. I had to push pretty hard for that dose and I suspect that a lot of transplant centers are somewhat reluctant to give standard weight based doses to their patients. I believe that due to bone marrow suppression as a result of the transplant the doctors worry about side effects more than do doctors with non-transplant patients. I think there is an increased concern about anemia, thrombocytopenia and neutropenia - not to mention organ rejection - and that likely influences dosing.
Again, Good Luck,
Mike
My experience was that Pegasys was much easier to tolerate than was Peg-Intron. It also appears from the posts here that most of the people who have treated with both found Pegasys to be easier too. My first treatment was with regular interferon (non pegylated), my second was with Peg-Intron and my third was with Pegasys. I do not know whether I could have tolerated 73 weeks of Peg-Intron. I found 73 weeks of Pegasys to be easier than 53 weeks of Peg-Intron.
Without knowing any of the circumstances of your Husband my first impression is that he was/is under-dosed with Ribavirin. When I did 800 mg of ribavirin the second treatment I cleared late - maybe week 35 or 40 - I just can't remember. I was also doing Peg-Intron on that treatment. I doubt that my late clearance was attributable to the Peg-Intron. When I was doing Pegasys and 1000 mg ribavirin I cleared by week 12 and probably at week 11. I have to believe the increased ribavirin dose was responsible for my significantly improved response. I had to push pretty hard for that dose and I suspect that a lot of transplant centers are somewhat reluctant to give standard weight based doses to their patients. I believe that due to bone marrow suppression as a result of the transplant the doctors worry about side effects more than do doctors with non-transplant patients. I think there is an increased concern about anemia, thrombocytopenia and neutropenia - not to mention organ rejection - and that likely influences dosing.
Again, Good Luck,
Mike
Thank you for your time as well. Any and all suggestions are welcome. And as I have said the encouraging words show that there are people out there that care about one another. I am so grateful for that.
Take Care, Ruth
Take Care, Ruth
Hey Mike, Do you think Pegasys is better than peg-intron?
You said you were trying to wean off anti rejection drugs but I thought you would have to be on a lose dose, maybe 0.5 or 1mg. I didn't think you could go without any prograf. My husband has a friend that was transplanted 12 years ago and he is still on anti rejection drugs. I guess it is an individual cases by case. His friend got a transplant solely for drinking too much alcohol not from hepc. I doubt that makes a difference.
You said you 146 and was on 1000mg, my husband is 190 and they only gave him 800.
I think he would have done better with the higher doses. He never needed procrit. On our next appointment I will bring up that question. Also kidney function is ok.
You have been SVR since December 2004 that is awesome. Thank you for still being on the forum for people like us that need information and an encouraging word. Some people may stay until they are well but I think you giving back is a special thing to do.
i hope some day my husband will be SVR and I can give back too!
Take care I'll talk to you later, Ruth
You said you were trying to wean off anti rejection drugs but I thought you would have to be on a lose dose, maybe 0.5 or 1mg. I didn't think you could go without any prograf. My husband has a friend that was transplanted 12 years ago and he is still on anti rejection drugs. I guess it is an individual cases by case. His friend got a transplant solely for drinking too much alcohol not from hepc. I doubt that makes a difference.
You said you 146 and was on 1000mg, my husband is 190 and they only gave him 800.
I think he would have done better with the higher doses. He never needed procrit. On our next appointment I will bring up that question. Also kidney function is ok.
You have been SVR since December 2004 that is awesome. Thank you for still being on the forum for people like us that need information and an encouraging word. Some people may stay until they are well but I think you giving back is a special thing to do.
i hope some day my husband will be SVR and I can give back too!
Take care I'll talk to you later, Ruth
Thank you for taking the time to post. I wish you every strength and perseverance.
This topic is above my head but I'm so relieved you've made contact with Mike and Brent. They are truly stellar. Their experience, knowledge, exceptional insight and kindness would mean the world to me, if I were in a similar situation.
Hugs and warm wishes.
This topic is above my head but I'm so relieved you've made contact with Mike and Brent. They are truly stellar. Their experience, knowledge, exceptional insight and kindness would mean the world to me, if I were in a similar situation.
Hugs and warm wishes.
For my last treatment I took Pegasys - 180 micrograms per week. It is usually dosed at 180 mcg per week for everyone, regardless of body weight.
I weighed 146 pounds and my ribavirin dose was 1000 mg per day. 1000 mg was adequate for my weight but I could have possibly taken and tolerated 1200 mg per day (with Epogen/Procrit for hemolytic anemia) and that dose possibly may have been better. Weight based dosing is currently the best way to dose ribavirn but an analysis of plasma levels would be a better way to determine optimum dose. But that is not available at many, if any, places in the US currently. Also an impaired kidney function would, in most cases, dictate a lower ribavirin dose for optimal results but again, plasma levels would be very helpful in this setting as well.
I stopped my last treatment in June 2004 so technically I am SVR since Dec 2004.
I get labs every two weeks because that is the frequency I want. I used to get monthly labs but in April of 2006 my surgeon began lowering my Prograf dose in an attempt to wean me off all anti-rejection drugs completely and I ran into problems. So now I want to see my blood work frequently.
I currently take 3 mg Prograf per day but I have been on 2 mg per day previously and will reduce my dose to 2 mg per day very soon. Once I know that I am alright at 2 mg Prograf per day I will probably go back to monthly labs.
Mike
I weighed 146 pounds and my ribavirin dose was 1000 mg per day. 1000 mg was adequate for my weight but I could have possibly taken and tolerated 1200 mg per day (with Epogen/Procrit for hemolytic anemia) and that dose possibly may have been better. Weight based dosing is currently the best way to dose ribavirn but an analysis of plasma levels would be a better way to determine optimum dose. But that is not available at many, if any, places in the US currently. Also an impaired kidney function would, in most cases, dictate a lower ribavirin dose for optimal results but again, plasma levels would be very helpful in this setting as well.
I stopped my last treatment in June 2004 so technically I am SVR since Dec 2004.
I get labs every two weeks because that is the frequency I want. I used to get monthly labs but in April of 2006 my surgeon began lowering my Prograf dose in an attempt to wean me off all anti-rejection drugs completely and I ran into problems. So now I want to see my blood work frequently.
I currently take 3 mg Prograf per day but I have been on 2 mg per day previously and will reduce my dose to 2 mg per day very soon. Once I know that I am alright at 2 mg Prograf per day I will probably go back to monthly labs.
Mike
I was just wondering why you have to do 84 weeks when you were UND after 24 weeks.
Have you been UND since the 24 weeks. I am very happy for you it makes you feel like there is hope when you hear of others becoming UND. What is the difference between UND and SVR? I am hoping if my husband has to go back on tx he will have better results. He is very down and I am as well. We have been married 28 years so I will be a lost soul without him. I'm sure they will come up with something before that happens. Well enough discouraging talk .
Between You and Mike I have learned alot and I appreciate it very much. Ruth
Have you been UND since the 24 weeks. I am very happy for you it makes you feel like there is hope when you hear of others becoming UND. What is the difference between UND and SVR? I am hoping if my husband has to go back on tx he will have better results. He is very down and I am as well. We have been married 28 years so I will be a lost soul without him. I'm sure they will come up with something before that happens. Well enough discouraging talk .
Between You and Mike I have learned alot and I appreciate it very much. Ruth
He actually weighs 190 so I'm wondering why they didn't give more.
When you said the last time they gave you adequate doses of peg and riba what were the doses? I'm still waiting the doctors forum to answer my questions but I guess they're very busy and may only post once a week or something.
So I guess most people on this forum have not had transplants. I guess most have a better chance of becoming undetectable than transplanters.
How long has it been since you acheived SVR? How often do you have to have bloodwork now? Are you on Prograf and how much? My husband is on 6 mgs a day. He had his transplant March 2007, How about you? If I am annoying you with all these questions please me know. I figure the more I know the better off we'll be . Well I'll let you go , I appreciate all your knowledge . You not only have been through all of this but I can tell you have done alot of research. Thanks again for your time. Ruth
When you said the last time they gave you adequate doses of peg and riba what were the doses? I'm still waiting the doctors forum to answer my questions but I guess they're very busy and may only post once a week or something.
So I guess most people on this forum have not had transplants. I guess most have a better chance of becoming undetectable than transplanters.
How long has it been since you acheived SVR? How often do you have to have bloodwork now? Are you on Prograf and how much? My husband is on 6 mgs a day. He had his transplant March 2007, How about you? If I am annoying you with all these questions please me know. I figure the more I know the better off we'll be . Well I'll let you go , I appreciate all your knowledge . You not only have been through all of this but I can tell you have done alot of research. Thanks again for your time. Ruth
I'm not an expert at Peg-Intron dosing so bear that in mind.
I think a .4 of a 120 mg redipen or vial is the correct dose for a person who weighs between 135 and 165 lbs - give or take a few pounds. If he falls within that weight range I think his dose is probably right according to the guidelines.
Mike
I think a .4 of a 120 mg redipen or vial is the correct dose for a person who weighs between 135 and 165 lbs - give or take a few pounds. If he falls within that weight range I think his dose is probably right according to the guidelines.
Mike
thank you also for caring and being supportive , it means alot to me. Any suggestions are very welcome. take care, Ruth
Again I am happy to hear from you. I looked at the box of the interferon in the refrig and it says 120mcg/0.5 and he gets 0.4. So I guess I worded it wrong.
I also went to the doctors forum you gave me but he has not responded yet. By talking to all of you I don't feel so alone, I wish my husband would talk also but he doesn't really want to do anything. He would see he isn't alonebut I can't force him. Well anything you have to offer is really appreciated. Talk to you soon, Ruth
I also went to the doctors forum you gave me but he has not responded yet. By talking to all of you I don't feel so alone, I wish my husband would talk also but he doesn't really want to do anything. He would see he isn't alonebut I can't force him. Well anything you have to offer is really appreciated. Talk to you soon, Ruth
To Brent, I appreciate your input as I am trying to learn all I can. My husband is a non responder and they claim because he is tp patient they have him a low dosage for a longer period of time. Can you tell me the dosage you were on and what geno type you are or were.he is a 1a and they said the hardest to treat.
I am so very happy for you and everyone that is undetectable. Thanks so much again, Ruth
I am so very happy for you and everyone that is undetectable. Thanks so much again, Ruth
I found this article on life expectancy for transplants with HCV. It sounds a little low to me but the author does have credentials. It mainly addresses HCV positive donors to HCV positive recipients but it also states that the mean life expectancy for HCV negative donors to HCV positive recipients is TEN YEARS. I have seen numbers on life expectancy after liver transplants in general of 18 years for men and 25 years for women but I don't have a site. If both articles are accurate then it appears as though the life expectancy in HCV patients after transplantation is significantly shorter. I knew it was shorter and that is why I tried so hard to eradicate the virus - to achieve SVR. I think and hope that SVR changes the numbers significantly but time will tell if that is the case with me.
AASLD: Mortality Risk in HCV-Positive Transplant Patients Similar Regardless of Donor Status
By Charles Bankhead, Staff Writer, MedPage Today
Published: November 04, 2008
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston. Earn CME/CE credit
for reading medical news
SAN FRANCISCO, Nov. 4 -- Hepatitis C-positive liver transplant recipients live just as long whether the donor is HCV-positive or -negative, data from the national transplant network suggest.
HCV-positive organ recipients lived an average of 8.28 years after receiving a liver from an HCV-positive donor, Patrick G. Northrup, M.D., of the University of Virginia in Charlottesville, reported here at the annual meeting of the American Association for the Study of Liver Diseases.
After adjustment for known mortality risks associated with HCV, the survival did not differ from the 10-year mean among HCV-positive patients who received livers from HCV-negative donors.
"It looks like recipients with hepatitis C can receive an organ from someone with the hepatitis C antibodies and do as well as they would with a non-hepatitis C donor," said Dr. Northrup. "That's with careful patient selection."
Mike
AASLD: Mortality Risk in HCV-Positive Transplant Patients Similar Regardless of Donor Status
By Charles Bankhead, Staff Writer, MedPage Today
Published: November 04, 2008
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston. Earn CME/CE credit
for reading medical news
SAN FRANCISCO, Nov. 4 -- Hepatitis C-positive liver transplant recipients live just as long whether the donor is HCV-positive or -negative, data from the national transplant network suggest.
HCV-positive organ recipients lived an average of 8.28 years after receiving a liver from an HCV-positive donor, Patrick G. Northrup, M.D., of the University of Virginia in Charlottesville, reported here at the annual meeting of the American Association for the Study of Liver Diseases.
After adjustment for known mortality risks associated with HCV, the survival did not differ from the 10-year mean among HCV-positive patients who received livers from HCV-negative donors.
"It looks like recipients with hepatitis C can receive an organ from someone with the hepatitis C antibodies and do as well as they would with a non-hepatitis C donor," said Dr. Northrup. "That's with careful patient selection."
Mike
You said: "He was on 0.4 mcg interferon and 800 riba."
Are you sure about the interferon dose?
I believe the standard dose for Peg-Intron is 1.5 micrograms per kilogram per week.
And the standard dose for Pegasys is 180 micrograms per week regardless of weight.
His dose just seems wrong to me but maybe I am missing something here. If I am please correct me - anyone at all.
Autoimmune hepatitis is a risk with treatment but I don't think it frequently develops. I believe it can be difficult to diagnose and especially in an HCV setting but there are tests that can narrow it down. I think it's crystal clear that his current treatment is not effective and for that reason alone I would think his treatment should be stopped. Of course I want to stress that I am not a doctor and you should not rely on my opinion in making any medical decisions. You can run it by your Husband's medical team however.
Good luck,
Mike
Are you sure about the interferon dose?
I believe the standard dose for Peg-Intron is 1.5 micrograms per kilogram per week.
And the standard dose for Pegasys is 180 micrograms per week regardless of weight.
His dose just seems wrong to me but maybe I am missing something here. If I am please correct me - anyone at all.
Autoimmune hepatitis is a risk with treatment but I don't think it frequently develops. I believe it can be difficult to diagnose and especially in an HCV setting but there are tests that can narrow it down. I think it's crystal clear that his current treatment is not effective and for that reason alone I would think his treatment should be stopped. Of course I want to stress that I am not a doctor and you should not rely on my opinion in making any medical decisions. You can run it by your Husband's medical team however.
Good luck,
Mike
I'm hoping that you mean that your husband was a relapser and not a non-responder because 80 weeks of treatment, never having responded would have been a tremendous amout of time after any normal doctor would have discontinued treatment.
Almost every doctor would stop your treatment at week 24 if you did not respond.
as you can see Mike and Walrun have had tremendous success. I think perhaps you might want to find a doctor who is knowledgable in the area of HepC. The fellow you have now doesn't appear to me to really know what he is talking about and right now with limited options you need a SPECIALIST WHO KNOWS HIS STUFF!
Good luck to you both - listen to Mike and Walrun, people who have been where you are and have succeeded. They know what they are talking about and would be more than glad to give you any helpful advice they can. They are GREAT men.
Almost every doctor would stop your treatment at week 24 if you did not respond.
as you can see Mike and Walrun have had tremendous success. I think perhaps you might want to find a doctor who is knowledgable in the area of HepC. The fellow you have now doesn't appear to me to really know what he is talking about and right now with limited options you need a SPECIALIST WHO KNOWS HIS STUFF!
Good luck to you both - listen to Mike and Walrun, people who have been where you are and have succeeded. They know what they are talking about and would be more than glad to give you any helpful advice they can. They are GREAT men.
I have a question. Was your husband a relapser or a non-responder? This is a significant distinction. A non-responder fails to achieve an UND status on viral load tests. For these patients, TX is usually discontinued (generally sometime soon after 24 weeks). 80 weeks is a long time to treat if the viral load does not become undetectable!
A relapser, on the other hand, is a patient who achieves UND status on viral load tests and remains that way through completion of treatment. A relapser has a recurrence of the viral load after cessation of treatment.
I started TX about 9 months after TP. I was UND at 24 weeks and have continued. I am in week 75 out of 84 weeks of TX.
I don't know as much as Mike, but I know that the progression of the virus and disease is very individual. My surgeon told me that it can progress slowly or very rapidly, much like with the original infection.
I am really sorry to hear that your husband has not been able to clear the virus with his new liver. I understand that Telepravir is expected to be approved in 2011, 2+ years away. I'll keep my fingers crossed for him.
Best wishes,
Brent
A relapser, on the other hand, is a patient who achieves UND status on viral load tests and remains that way through completion of treatment. A relapser has a recurrence of the viral load after cessation of treatment.
I started TX about 9 months after TP. I was UND at 24 weeks and have continued. I am in week 75 out of 84 weeks of TX.
I don't know as much as Mike, but I know that the progression of the virus and disease is very individual. My surgeon told me that it can progress slowly or very rapidly, much like with the original infection.
I am really sorry to hear that your husband has not been able to clear the virus with his new liver. I understand that Telepravir is expected to be approved in 2011, 2+ years away. I'll keep my fingers crossed for him.
Best wishes,
Brent
Thank you for all the information. My husband viral load was 1 million when he started. The doctors say if he continues right now they have found some people are getting auto immune hepatitis and your own body starts attacking the liver. He was on 0.4 mcg interferon and 800 riba. I don't think the doctor expected svr but was hoping for a load in the thousands not millions. And you are right life expectancy individual
from patient to patient. Can you tell me what dosage you started at and when you came off did your viral load go crazy? Thanks again, Ruth
from patient to patient. Can you tell me what dosage you started at and when you came off did your viral load go crazy? Thanks again, Ruth
I am not certain of the life expectancy of liver transplant recipients with an underlying disease of hepatitis C but it is not 5 years. The evidence suggests that approximately 20% of HCV transplant recipients who don't treat/clear will develop cirrhosis within 5 years. Of those 20% who do develop cirrhosis within 5 years I do not know the life expectancy but I would guess that it's not very good. I do know a man who was transplanted in 1996 for HCV and he never treated and he is doing extremely well - I saw him a few months ago. Life expectancy can be a very individual thing, even for HCV transplants, and without knowing his liver histology I wouldn't know where to start to try and estimate it.
I seem to recall that his doses were low but I am not sure about that. With the recent information about maintenance treatment not diminishing fibrosis progression I do not understand why he has been treating for this long. I have never heard of a patient treating that long without becoming undetectable long before 80 weeks - very long before 80 weeks like say, at week 24 or maybe 26 at the latest. If my recollection is right and his doses were pretty low I don't see why his doctor would have expected him to clear or achieve SVR.
I treated shortly after transplant. I think it was a year but lately I have wondered if it wasn't a little shorter. I was on low dose of ribavirin and maybe low on interferon also and I never became undetectable that treatment.
Then 6 months after stopping I started again and my ribavirin dose was still low and I became undetectable late - maybe week 40 - and I stopped at week 52 and relapsed immediately.
Then 6 weeks later I started again with adequate doses of both Peg and Riba and I became undetectable at week 12 or maybe week 11. I treated for 73 weeks and achieved SVR, So yes, you can fail and succeed the next try but I did respond. I'm not sure about your Husband since his viral load is 5 million IU/ml at week 80. But, I don't know his starting viral load and I don't know his doses. If his doses were just a little low I think his VL would be better than it is if is a responder. I might try posting to the "Liver Transplant" board where there is a real transplant physician to advise you.
Here is the link: http://www.medhelp.org/forums/show/274
I wish you the best,
Mike
I seem to recall that his doses were low but I am not sure about that. With the recent information about maintenance treatment not diminishing fibrosis progression I do not understand why he has been treating for this long. I have never heard of a patient treating that long without becoming undetectable long before 80 weeks - very long before 80 weeks like say, at week 24 or maybe 26 at the latest. If my recollection is right and his doses were pretty low I don't see why his doctor would have expected him to clear or achieve SVR.
I treated shortly after transplant. I think it was a year but lately I have wondered if it wasn't a little shorter. I was on low dose of ribavirin and maybe low on interferon also and I never became undetectable that treatment.
Then 6 months after stopping I started again and my ribavirin dose was still low and I became undetectable late - maybe week 40 - and I stopped at week 52 and relapsed immediately.
Then 6 weeks later I started again with adequate doses of both Peg and Riba and I became undetectable at week 12 or maybe week 11. I treated for 73 weeks and achieved SVR, So yes, you can fail and succeed the next try but I did respond. I'm not sure about your Husband since his viral load is 5 million IU/ml at week 80. But, I don't know his starting viral load and I don't know his doses. If his doses were just a little low I think his VL would be better than it is if is a responder. I might try posting to the "Liver Transplant" board where there is a real transplant physician to advise you.
Here is the link: http://www.medhelp.org/forums/show/274
I wish you the best,
Mike
17 years after a TP is pretty darn good....ill reseve 3 livers please....maybe i can grow me one with stem cells soon
Agrees Mike simon is your man to ask, transplanted, and Brent also, Both really wise in the way s of it.
brent is still treating.
Best wishes,
brent is still treating.
Best wishes,
You might want to flag Mikesimon and IAmTheWalrus, They are both transplant patients. Mike has cleared after tp, and, iamthewalrus i believe is still treating post tp.
Best to both of you
Cando
Best to both of you
Cando
"The doctor said transplant livers will only last 5 years with a hep c patient".
This is a complete nonsense. Your doctor does not know what he is talking about. The average life expectancy for transplanted liver is about 17 year (it was discussed on this forum but I don't have the reference at hand. Get a knowledgeble doctor, a hepatologist who knows Hep C. What was the viral load during treatment, was your husband undetected, at what week of tx?
Best luck to you.
.
This is a complete nonsense. Your doctor does not know what he is talking about. The average life expectancy for transplanted liver is about 17 year (it was discussed on this forum but I don't have the reference at hand. Get a knowledgeble doctor, a hepatologist who knows Hep C. What was the viral load during treatment, was your husband undetected, at what week of tx?
Best luck to you.
.
Sorry to hear the bad news...I don't have the experience or knowledge to answer your question...just want to know...can he stay on the tx meds ? do they have any effect on keeping the vl or damage under control?
I think that Telaprevir may be the first thing on the market in a year or two...I hope sooner that later for your sake. Hang in there.
Gator
I think that Telaprevir may be the first thing on the market in a year or two...I hope sooner that later for your sake. Hang in there.
Gator
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