visit with doctor after interruption in Peg/riba treatment

[sallyo]

Hi, saw my transplant/hep doctor today.  For those of you who remember, I had to stop treatment just after my first UND at 70 weeks due to an atypical pneumonia. I was hopitalized for 2 weeks and in addition to other med, I had large dosages of steroids.  I am down to 10 mg/ day now.
    My liver doc understand that I neeed the steroids but want me off asap.  At the end of one week I will go to 5 mg/ day and by then I will see the pulmonary guy that put me on them.  My Miami transplant team is concerned like I have heard some say on th the forum that the steroids could exacerbate the hep c.
   Despite that fact that I did not get an UND until 70 weeks, they still think it is possible to svr or at least keep the virus at bay until newer treatment is available.
     He said that vx950 and also some others are first being trialed in cirrous pt and if passed will go to post transplant pt.  I think he meant all others but not to exclude post transplant.
  mike simon:  I asked about statistics concerning transplant pt with and without clearing the virus and the possible advantages and he seemed to not know about it.  He gave me the impression that any time it could be cleared it was a good thing.  Maybe just another train of thought in a different area.  Somethimes I think he know things but doesn't want to get in to it with me for fear I will not understand.  When I mentioned VX-950, he said "what's that".  This guy works with hcv patients all of the time, also does the surgeries.  Then when he commented it was as though he did know something but since its all up in the air

[sallyo]

he did not want to get in to it. I really beleive in him.  Hejust wants all of the studies in.  When I have finished this course of anti-fungal meds for my lung, eliminated the steroids and cut back on my anti rejection meds a bit, he plans to begin the Peg/riba.  I figue that will be at in Jan.  Will be doing frequent lft's and quants.  If they go up more he will want bx but definitely want to start the treatment if I am stronger.  Sorry for the long post but I had said I would keep people updated in case they wanted to know or could use any of this information.  Thanks

[FlGuy]

I hope your will easily get back on an even keel soon. If Miami you mean UM, they are involved in the clinical vx trails and have some very knowledgeable coordinators for many hcv meds in trials.  I'm sure your doc has access to those folks. vx-950 is also known as Telaprevir.

[mikesimon]

It sounds like he has a plan for you and that should be comforting. I really have trouble when I don't see a plan - I do not do well with too much uncertainty.
Sally, I'm posting a link to a recent article at medscape.com. You must be registered to view but it's free and simple to register and you can sign up for emails about subjects that interest you and they'll send out the stuff you sign up for. I recommend you check it out.
<A HREF="http://www.medscape.com/viewarticle/547370?src=mp/">Emerging Issues in Hepatitis C Virus-Positive Liver and Kidney Transplant Recipients</A>

I think it's pretty well established that steroids do result in increased viral load but I took a lot of steroids when I was treated for acute rejection and yet I cleared and reached SVR. I would view your steroid treatment as a setback to your HCV therapy. It does not, in an of itself, preclude you from successful treatment for HCV. This is murky ground we transplants inhabit and we must sometimes work hard to remain hopeful if we are to prevail.
I wish you well Sally. Good luck and Happy Holidays. Mike

[sallyo]

Great information. I am registered now on that site.  Thank you. Lots to think about.  Actually glad I read it now rather than before I became ill.  Made the steroids go down easier since I really needed them. I received them in high doses IV in the hospital and left on 40mg/day.  I am down to 10/day and will go to 5 next week.  I see now why my transplant doc saw it as an urgent matter to get off of them asap.  No glucose problems thankfully but will sure need to watch.  We know the virus showed its ugly head again.  Great news on the vx right?  Gives hope anyway. It also gives me hope that you are SVR.  I hope I read that correctly.

[mikesimon]

Yes I am still SVR insofar as I am serum undetectable per Heptimax <5 IU/ml. I have been undetectable since 2004 but when I had a biopsy June 2006 a small amount of HCV was detected 30 IU/ml in my liver and yet a Heptimax 2 weeks before my biopsy and another 1 week after my biopsy were both undetectable. According to some recent studies HCV has been found in a significant number of SVRs so apparently this can and does occur. Mike