So sorry to hear your troubles. It's not promising.
My guess is you had it already, just didn't show up. Did you get tested for it before you started tx? I had tests done and they came out 'equivocal', which means I may have it, may not. So far, I don't think so. Do you work with chemicals or anything that may have been tough on your immune system? Again, I'm so sorry you have AIH.
I'd like to hear what others have to say on this.
I didnt have it already. the specialist said that it is an uncommon long term side effect from tx..............
could you please tell me what AIH is ,...thanks
Sorry it is auto immune hepatitis
Geez, sas so sorry to hear this, you treat this with steriods? how do you fight off the virus when your ready to treat again, I have heard of this, but do not know much about it, can you get rid of it? so you will just have your plain hepc again?
So Sorry , and God Bless
Hi, Look you may not be screwed!. AIH does oftern need steroids, but then can frequently be managed with azathioprine (Imuran) alone. Imuran has some (weak) activity agains HCV. It is likely that once you AIH is controlled (and the reasons for it being triggered are contained in this article: Replicative homeostasis II: Influence of polymerase fidelity on RNA virus quasispecies biology: Implications for immune recognition, viral autoimmunity and other "virus receptor" diseases by
Richard Sallie; Virology Journal 2005, 2:70) your hepatologist MAY be able to restart your HCV treatment. You may need stroids as well (that will increase the HCV levels), but if the interferon / ribavirin is effective it will probably overcome the effect of low-dose prednisolone. I have treated some patients with AIH / HCV combination effectively like this. It makes it harder, but not impossible; Don't Dispair!
Very interesting. By your comment above, are you a medical doctor? We could sure use one around here. Someone posted a link to the full-text study you referenced here recently:
Thanks for stopping in. I hope you can return with more advice.
Yes, Bill. Hepatologist with an interest in viral hepatitis as it turns out. Don't practise in the US, tho', but once did. South of the Equator. I suspect that there may be some very encouraging and exciting developments with HCV in the next 2-3 years, from what I have seen.
take it easy
I sure wish my Dr. would read this board...I think ALL Dr.'s treating Hep should. Most of them have NO idea what we go through and MANY act like it's nothing. Anyway, just wanted to welcome a DR to the board, WELCOME!! What a breath of fresh air knowing that there is ONE Dr. out there truly searching for what Hep folks go through. Blessings to ya!
My 2 cents. I have no credentials. HCV has only been treated with interferon for a relatively short period of time. The disease is new and so is the treatment; relatively speaking. I believe that AIH can be caused by treatment. It is also an occasional result of having HCV and not treating. I believe that doctors figure that it's safer to try treating than not treating.
The new generation of drugs and compounds should bring a lessened exposure to interferon either thru dose reduction or shortened dosing periods. It is theorized that the immune system may react to interferon and "over rev" and start targeting other body parts; not just our virus. I wonder...... if interferon is the culprit whether it might also be a reasonable thing to wait a few years until ones exposure to interferon could be mitigated while treating? The polymerase inhibitors may replace interferon. At the minimum IF Telaprevir pans out one may be able to treat in half the period currently dosed while facing roughly double the SVR rate. It's still too early to be able to tell about what to expect with treatments but if they live up to the promise that a few show you may very well be able to treat, cure the HCV, attain the SVR and then regulate the AIH.
As AIH becomes better understood you may also find that they may develop better means of regulating the disease. I just wonder if you should throw more "fuel on the fire" through more exposure to interferon when shorter or better treatments seem to be on the horizon. We may not hear about all the hazards of current TX until after improved treatments occur. I believe that I have heard that some doctors are able to moderate the balance of both treating HCV while fighting the results of AIH but again, the optimal results of TX are only 40-50% at best for most of us. Surely the SVR rates will drop when steroids are added to the mix when treating HCV. Might the results of AIH be the greater risk to you now than the HCV? Might a new round of TX exacerbate your AIH?
Don't give up. Pam (PLN) cleared the virus in 4 days with Telaprevir. MREmeet also cleared the virus in the same trial inspite starting treatment, stopping treatment (if memory serves me right) and then restarting with reduced dosages and with steroids. I agree that you can beat this virus. The question may be in part whether to attack it now or in a few years with a different form of treatment.
I agree with Bill and M'keela!
Welcome to the Forum and thanks for taking the time to offer your comments and suggestions.
By the way, I also agree that someone with your experience would be very welcome here. My post was intended to provide another possible alternate viewpoint to treating now. It was also intended more as a question than as an answer. I certainly appreciate any doctor willing to share their knowlege and experience.
Thanks for your take on this subject. Your thoughts are well considered and delivered; I
Thanks Bill, I'm just a grunt with no training and so it's strictly "take it with a grain of salt". : ) As much as anything I simply also enjoy reading the opposing "on the other hand" type viewpoints.
" I was surprised to hear you mention the concept of PI
all very knowlegdable stuff thanks so much
Bill, ah, I see. In my reply (C12) I wrote in the second paragraph;
"The polymerase inhibitors may replace interferon."
Protease inhibitors are what may replace or minimise the use of interferons whereas the polymerase inhibitors may end up replacing ribiviren. Vertex's Telaprevir is a protease inhibitor. While Telaprevir is still in trials and is not being tested to replace interferon the trials results are showing that treatment time (and therefore exposure to interferon) and may be greatly reduced in the near future also while showing increased SVR rates. My wording WAS both incorrect and imprecise. My basic premise holds true; SVR is attainable in spite of AIH and may become even more attainable in the relatively near future. The question remains as to whether to treat now or wait. There are trade-offs and gambles with either solution.
Thanks for the heads up; I didn't notice it last night.
I was recently diagnosed w/AIH based on analysis of a liver biopsy. I also have Hep C. Have had it for probably 40 yrs. Don't know all the particulars. Do know that I have mild stage 2 fibrosis, no chirossis, but enzyme levels in the high 700's.
I have a consultation w/my doctor, tomorrow, to try and gain a better understanding of the implications of this condition, whether there is any question that I actually have AIH, and other pertinent questions.
During my initial consultation, my Doctor, a nationally recognized expert in the treatment of hepatitis, indicated that his approach would be to treat AIH w/Prednisone, and assuming a satisfactory response, continue a maintenance dose (5mg) for approx 1 yr while waiting for current trial treatment to become available (I assume this is PEG-Interferon/Ribaviran. Sorry, not very sophisticated on this stuff.
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 have not seen any other info on the web stating that AIH is curable. Do you or anyone else have any information about HCV treatment simultaneously "curing" AIH?
since the hep c virus is more responsible for activating autoimmune disease - it would be more correct to say you developed it from the virus or a combination of tx and the virus - not just the treatment
i wasnt referring to you old fish - however i would tend to agree with your dr
Thanks for the response. Met w/the PA at my Dr's office, today. She explained that when AIH is brought on by HCV, as they believe it has been, in my case, there is anecdotal, but not much research-based, evidence that putting the HCV into permanent remission can have the same effect on the AIH.
She couldn't put any kinds of numbers to the odds of such an outcome, but it's encouraging to know that it's possible.
Apparently, the doc's plan is to continue Prednisone JUST as long as necessary, seeking the lowest possible dose that will control AIH and transitioning/augmenting(?) with Imuran to minimize or eliminate need for the steroid. He is hoping AIH can be controlled for approx a yr when he believes he seems confident he will be able to take advantage of the shorter duration of Interferon therapy available using the triple combination Peg-Interferon/Ribavirin/Protease Inhibitor (Telaprevir, I think?) combination.
He seems to concur with SonicBandaid that while treating individuals that have both AIH and HCV is not easy, it is doable.
Hey, here's an article you might find encouraging about successful treatment of a patieint with AIH/HCV overlap syndrome.
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
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.