Aa
WARNING - Tx can trigger AIH
I had no idea that the above could happen. I am geno 1 decided to start tx because I have had hep for 20 years. Didnt really need to start tx as biopsy showed f1 but wanted to give it a go while relatively young (37) and healthy. Tx'd for 12 weeks as a non-respsonder. Stopped tx in January. I was still feeling like **** 3 months after stopping so did investigative tests to discover my lft's have jumped to between 400 - 500, AFP 88 and I have been told I have AIH. Only option is to take steriods which feeds the virus...cant try tx again either because of the AIH. Pretty screwed really......I have 4 kids at home and had a great career ahead of me which has gone down the drain (spent five years at Uni as a mature adult student) Now I can work and while I looked 27 prior to tx I know look at least my age...Why arent we told about AIH being a risk?..I know I wasnt.
my wife was diagnosed with AIH 6 years ago at age 21 had a bioposy and was already in f4 liver stage... numbers alt ast were all high 700. dr said if we hadnt come in she would have died that week.. but..was on prednisone and imuran for 5.5 years and in december they swithched her to endicort and she has been doing well on that, but she is much better off the prednisone.. yeah!!!. she lost a lot o weight which also helped with liver because she also developed nash, which is your liver stores fat .., doctors have her on the nash diet and we try to stick to it lol,,
Thanks for the information.
Just wanted to clear up that I have never been treated for HCV. I seemed to have developed AIH as a result of HCV, which apparently is a well-known, but apparently not extremely common syndrome.
Just wanted to clear up that I have never been treated for HCV. I seemed to have developed AIH as a result of HCV, which apparently is a well-known, but apparently not extremely common syndrome.
the thing about side effects is theres no proof of the mechanisms behind the side effects - if it happens during a trial or study it is listed as a side effect - which proves absolutely nothing - the fact that people who havent treated develop these conditions is proof that its not as much the treatment as people like to think - or blame - there are around 10 autoimmune conditions caused by the hep c virus - including all the ones reported on tx - coincidence - nope
Interesting to see this old thread again. I'd throw in some addenda, some 3 years and 3 months later. There has been quite a bit of water under the bridge since when it was first posted. I don't think that Sonic Band Aid has been here for several years. I think Bill may have still been treating at the time it was written
Before posting further, it's worth mentioning that there is a difference between the title, which mentions auto-immune hepatitis and contrast it to auto-immune disease possibly brought on by TX. AIH would be a rather rare occurrence, but auto-immune post TX issues might range from 2-5%.(I wonder if anyone has any data or *guesstimates* on that?)
First..... there are now 2 trials from 2 different pharma's which combine a polymerase inhibitor (such as Telaprevir) with a polymerase inhibitor W/ Vertex it is called VX-222 both in combination with SOC or without both or one of the components; either IFN or RBV.
.......We should soon see the results of TX without the addition of IFN, which in this case could be a contributing factor to the auto-immune disease. (both trials are in Phase 2 of FDA approval)
...... whether this is effective or not we will soon see. Even if it were proven that IFN continued to be needed we will see less total exposure to the drug due to shorter dosing periods; the PI's will allow many genotype 1's to treat in half the time. The dual PI's could bring about a TX period of 12 weeks or less, even if they included interferon, or reduced dosing of IFN. This in kind may reduce the likelihood of auto-immune reactions brought on by TX.
Second...... whereas it may be true that the current SOC can bring about auto-immune issues in a small group I wanted to share a little story of a friend of mine who suffered from AI reaction to TX. Common logic would indicate that treating a second time (they rebounded following the first TX) would induce a similar rheumatoid flare up that they experienced during the first treatment. This party tried again, did a little bit better but still relapsed. Due to advanced staging this person decided to treat again. Once again common sense seemed to indicate that this could be both dangerous and also doomed to the same result as the first 2 attempts.
.........In this case however, my buddy achieved an RVR, and they have remained clear all the way through TX. They still have a few months to go yet to treat a year but they have accomplished so much when common sense or statistics would have indicated that they had a slim chance at success.
........and the Rheumatoid reaction to TX? It has not shown itself to be a critical factor in her treating factor and (so far) success.
Every case is different and there may also be situations which may be the mirror reverse of my friends.
Finally....regarding the mention by Oldfisherman;
-------------------------------
"He also indicated that assuming AIH could be controlled and that a flare up could be avoided during HCV treatment, that that treatment could put HCV and AIH into permanent remission. "
--------------------------------
I'm no expert by any means but remission is the best that one could hope for. It has also been my understanding that rheumatoid type reactions to joints must be countered and controlled very quickly or else permanent irreversible damage can occur. I have seen witnessed skilled doctors negotiate the immune reactions during TX, but they can also impact on ones chances of success with current SOC. I would also mention that auto-immune disease and the various forms it can take can be very dangerous and debilitating. I lost a customer to it last year; instead of joints being attacked in this case it was the lungs.
And a comment to zoom1zoom.
I think technically you are correct, it's difficult to assess what part of this is HCV and which part is TX, or a reaction to interferon particularly. Until they treat a target population non-HCV infected with interferon ....say of 1000 or 10000 people we won't really know if the same percentage of people would have AI issues or flares. Of course.......that isn't likely to happen anytime soon and so it will remain a topic of speculation. Anecdotal experience shows us that a percentage of those who treat (HCV infected individuals w/ decades of infection) who never had auto-immune issues seemed to develop them either during or following TX with current SOC. Even the companies (Shering or Roche) that provide the treatment allow that developing auto-immune issues is a possible side effect of treating with SOC.
best,
Willy
Before posting further, it's worth mentioning that there is a difference between the title, which mentions auto-immune hepatitis and contrast it to auto-immune disease possibly brought on by TX. AIH would be a rather rare occurrence, but auto-immune post TX issues might range from 2-5%.(I wonder if anyone has any data or *guesstimates* on that?)
First..... there are now 2 trials from 2 different pharma's which combine a polymerase inhibitor (such as Telaprevir) with a polymerase inhibitor W/ Vertex it is called VX-222 both in combination with SOC or without both or one of the components; either IFN or RBV.
.......We should soon see the results of TX without the addition of IFN, which in this case could be a contributing factor to the auto-immune disease. (both trials are in Phase 2 of FDA approval)
...... whether this is effective or not we will soon see. Even if it were proven that IFN continued to be needed we will see less total exposure to the drug due to shorter dosing periods; the PI's will allow many genotype 1's to treat in half the time. The dual PI's could bring about a TX period of 12 weeks or less, even if they included interferon, or reduced dosing of IFN. This in kind may reduce the likelihood of auto-immune reactions brought on by TX.
Second...... whereas it may be true that the current SOC can bring about auto-immune issues in a small group I wanted to share a little story of a friend of mine who suffered from AI reaction to TX. Common logic would indicate that treating a second time (they rebounded following the first TX) would induce a similar rheumatoid flare up that they experienced during the first treatment. This party tried again, did a little bit better but still relapsed. Due to advanced staging this person decided to treat again. Once again common sense seemed to indicate that this could be both dangerous and also doomed to the same result as the first 2 attempts.
.........In this case however, my buddy achieved an RVR, and they have remained clear all the way through TX. They still have a few months to go yet to treat a year but they have accomplished so much when common sense or statistics would have indicated that they had a slim chance at success.
........and the Rheumatoid reaction to TX? It has not shown itself to be a critical factor in her treating factor and (so far) success.
Every case is different and there may also be situations which may be the mirror reverse of my friends.
Finally....regarding the mention by Oldfisherman;
-------------------------------
"He also indicated that assuming AIH could be controlled and that a flare up could be avoided during HCV treatment, that that treatment could put HCV and AIH into permanent remission. "
--------------------------------
I'm no expert by any means but remission is the best that one could hope for. It has also been my understanding that rheumatoid type reactions to joints must be countered and controlled very quickly or else permanent irreversible damage can occur. I have seen witnessed skilled doctors negotiate the immune reactions during TX, but they can also impact on ones chances of success with current SOC. I would also mention that auto-immune disease and the various forms it can take can be very dangerous and debilitating. I lost a customer to it last year; instead of joints being attacked in this case it was the lungs.
And a comment to zoom1zoom.
I think technically you are correct, it's difficult to assess what part of this is HCV and which part is TX, or a reaction to interferon particularly. Until they treat a target population non-HCV infected with interferon ....say of 1000 or 10000 people we won't really know if the same percentage of people would have AI issues or flares. Of course.......that isn't likely to happen anytime soon and so it will remain a topic of speculation. Anecdotal experience shows us that a percentage of those who treat (HCV infected individuals w/ decades of infection) who never had auto-immune issues seemed to develop them either during or following TX with current SOC. Even the companies (Shering or Roche) that provide the treatment allow that developing auto-immune issues is a possible side effect of treating with SOC.
best,
Willy
Hey, here's an article you might find encouraging about successful treatment of a patieint with AIH/HCV overlap syndrome.
http://www.cghjournal.org/article/S1542-3565(04)00130-2/abstract
Abstract
The chronic hepatitis C-autoimmune hepatitis (AIH) overlap syndrome has been described in the literature, but to date appropriate therapy remains controversial. We report on a 28-year-old woman with hepatitis C-AIH overlap syndrome. The patient was infected with HCV genotype 1b and had laboratory and immunologic findings of AIH type 2 such as increased Igs and a high titer of antibodies against liver-kidney microsomes. Initial liver biopsy specimen demonstrated end-stage liver fibrosis due to chronic hepatitis. After long-lasting corticosteroid treatment, only partial remission was achieved. In contrast, short-term antiviral therapy with interferon-α2b in combination with ribavirin was followed by complete biochemical and virologic remission. However, 15 months later, a relapse of AIH was observed. After restarting corticosteroid treatment, transaminase levels completely normalized. Surprisingly, in this patient with overlap syndrome, short-term interferon therapy induced complete remission of chronic HCV infection and regression of severe liver fibrosis
http://www.cghjournal.org/article/S1542-3565(04)00130-2/abstract
Abstract
The chronic hepatitis C-autoimmune hepatitis (AIH) overlap syndrome has been described in the literature, but to date appropriate therapy remains controversial. We report on a 28-year-old woman with hepatitis C-AIH overlap syndrome. The patient was infected with HCV genotype 1b and had laboratory and immunologic findings of AIH type 2 such as increased Igs and a high titer of antibodies against liver-kidney microsomes. Initial liver biopsy specimen demonstrated end-stage liver fibrosis due to chronic hepatitis. After long-lasting corticosteroid treatment, only partial remission was achieved. In contrast, short-term antiviral therapy with interferon-α2b in combination with ribavirin was followed by complete biochemical and virologic remission. However, 15 months later, a relapse of AIH was observed. After restarting corticosteroid treatment, transaminase levels completely normalized. Surprisingly, in this patient with overlap syndrome, short-term interferon therapy induced complete remission of chronic HCV infection and regression of severe liver fibrosis
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