WARNING - Tx can trigger AIH

[sass_blue]

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.

[illo]

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.

[sass_blue]

I didnt have it already.  the specialist said that it is an uncommon long term side effect from tx..............

[pitter]

could you please tell me what AIH is ,...thanks

[sass_blue]

Sorry it is auto immune hepatitis

[goldyn]

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
                                               Goldyn

[Bill1954]

Hi Sass,

I don’t know much about AIH. I do know that several members here have supposedly developed AIH because of IFN treatment. Have you been given a firm diagnosis? My limited understanding of this condition is that it’s more a diagnosis of elimination; not always cut and dry. Have you considered a second opinion? I think that with what you have at stake here, it might be in order. Boy, the implications are rather gloomy. With AIH being an absolute contraindication for IFN treatment, you’re currently left with few options, eh?

There is an AIH forum in England that I’ve heard mentioned here before, but I don’t have a link for it. I’ll flag Marri that posts in here occasionally, maybe she can offer some ideas.

I wish you luck; let us know how things progress-

Bill  

[SonicBandaid]

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!

[Bill1954]

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:

http://www.virologyj.com/content/4/1/29

Thanks for stopping in. I hope you can return with more advice.

Bill

[sass_blue]

great info thanks

[SonicBandaid]

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

[mkeela]

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!
                                                                    -Mequila

[Willy50]

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.

best wishes,
Willy

[wyntre9]

I agree with Bill and M'keela!

Welcome to the Forum and thanks for taking the time to offer your comments and suggestions.

Wyntre

[Willy50]

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.

best,
willy

[Bill1954]

Willy,

Thanks for your take on this subject. Your thoughts are well considered and delivered; I’ve read some of you comments here in the past, and find them quite informative.

Autoimmune disorders are a scary subject indeed. Our endogenous immune system is an incredibly complex and powerful mechanism; it makes our current efforts at viral control/eradication seem primitive, huh? The thought of something like this running amuck is … ahem… to be highly respected at minimum.

I fully agree that there is so much we don’t know about this disease and its concomitant treatment. You appear to be leaning toward the ‘finesse’ approach. I’m assuming that your current histology supports your position. This seems like a very reasonable conclusion, especially for someone that has minimal damage.

Unfortunately, I don’t feel as though I have the luxury of time to exercise that option. As an F 3-4, I’m currently using the “sledgehammer approach”, and treating off-label in terms of both dosage and duration in an effort to achieve long-term viral response or possibly stave off further progression (I treated for 13 months previously and promptly relapsed).

Interestingly enough, I’ve been so engulfed with the current SOC, that I really haven’t followed the advances in the PI’s as closely as many in here. Although the preliminary news sounds encouraging, I was surprised to hear you mention the concept of PI’s as a possible stand-alone Tx. My understanding is that IFN will remain *at minimum* as an adjunct to PI’s, necessary because of escape variant rate when PI’s are used as monotherepy. If you’ve heard news to the contrary, would you mind passing it along?

Funny, I’m also starting to understand the role that philosophy plays in the decision process. Although they can’t be qualified or quantified, weighing in on such issues as quality of life, burden to society, and other equally important topics must be considered as well. Tough decisions, huh?

Well, I suppose I’m done with my ramble for now. Thanks again for adding your thoughts to this forum; and if you find time, I’d be interested to hear where you stand with liver damage, treatment efforts, etc.

Take good care—

Bill

[Willy50]

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.

you wrote:
" I was surprised to hear you mention the concept of PI’s as a possible stand-alone Tx. "

I didn't think I wrote that exactly but I did mention that Polymerase inhibitors may end up replacing Interferon (if all goes well some 3-5 years possibly in the future)  Vertex maintains that they would like to combine a leading polymerase inhibitor (which one is unknown at this time) with their own protease inhibitor (Telaprevir) and they theorize that at some point down the road they may replace the current SOC.  I believe that Sherring-Plough is engaged in this very thing right now.  All that is looking down the road quite a piece and assumes that TVR is approved.  : )  That is also a tad off the subject matter of this thread.

you wrote;
" My understanding is that IFN will remain *at minimum* as an adjunct to PI’s, necessary because of escape variant rate when PI’s are used as monotherepy. If you’ve heard news to the contrary, would you mind passing it along?"

No, we see or understand it exactly the same and I regret if my wording was imprecise on the subject.  Other than that it is probably true for any form of current monotherapy.

Thanks for the kind words and I'm sure we'll have time to compare more notes in the future (it's after midnight and got to go to work in the AM)  : )   As much as anyone else here I just try to read and understand.  : )  

I just butted in to try to echo that an SVR is not out of the picture for sass_blue.

best,
willy

[sass_blue]

all very knowlegdable stuff thanks so much

[Willy50]

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.  

best,
Willy