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Avatar universal

Restarting treatment earlier. Is it a mistake?

Hi, I received my first UND in July and then my Peg/riba treatment was interupted off and on the next few months due to illness.  I am still receiving treatment for an opportunistic lung infection which is apparently very stuborn.  I am post transplant also so my immune system was pretty low.  Also I worked in a hospital in a highly infectious area.  Won't do that again.   Anyway I have had no treatment for the HCV since Sept.  My November VL came back UND.  I was thrilled but a little surprised
      I asked my doctors if I could start the Peg/riba again so as not to loose this opportunity to acheive SVR but they all seem to put the question off or refer it to another doctor for approval.  Final say was to come from the transplant team in Miami.  They don't see me until Dec 12th and was told to wait until I was seen.  My nurse co-ordinator is out ill and no one is responding to my plea for more immediate help.
   I feel better than I have in months.  No doctor has givin me a reason for any kind of interaction with the ribasome I am taking.  Last Wed I had blood drawn and my liver enymes had elevated from 14 to the 50's.  Scared me.  I took the peg and riba on Thanksgiving on my own.  Seemed bad to wait for appointments when the meds are in the fridge.  After about 6 hours I had a bad flu-like reaction but the next day I was better and am continuing to do well.
    Do you think I messed things up> I am planning to take it again on Thursday.  By the time my Dec 12th appointment rolls around I will have taken it 3 weeks. If I feel ok which uspectI will should I tell the
41 Responses
Avatar universal
how sensitive were the tests used in July and Nov?

what was your total tx time?  You have been negative for two months post  tx, and still negative.
what was your genotype again?
Avatar universal
The tests were Bayer and only down to 615 IU/ml.  I am 1a genotype.  I treated for approx 70 weeks to get my first UND in July, then had to stop treatment and Aug it came back 750,000.  Started treatment and it was UND in Sept, not tested in Oct. Became ill and had to stop treatment again but it was still UND in Nov.  I don't want to loose this opportunity especially since I have the meds.  I think the doctors are just trying to cover themselves but I don't think the virus cares much when my appointment is.  When I saw the liver enymes jump I just did it.  So far no problem.  Just don't know if owning up to it will cause a problem or maybe solve theirs.  Thank you so much for answering
Avatar universal
Sally,,,sorry to hear you are having problems.  If I was you,,,I would get a PCR as soon as possible if that means having your family dr do it and if you are detectable then make your appointment next month to decide best stragedy for you go on this.  Once you have stopped the meds for a period,,,,you pretty much have to start back from square 1.  I understand what you are saying about having them in your fridge but I don't think I would take them now until you find out if you have a viral load.
Best wishes!
148588 tn?1465782409
I think if you're in the middle of fighting a 'stubborn' lung infection, the doctors are doing better than "just trying to cover themselves" - sounds like they might have an honest interest in your well-being.
Avatar universal
Thanks for all response. I guess I still have time next week to decide if I will continue.  Maybe I will press to talk to my doctor again.  I just really hate to start over at this point. I have 10 more days on the ribasome and I really feel much better. I will take all you say in to consideration.  Wishing you well
Avatar universal
I had spent hours looking for a study that I had bookmark a while back and could not find it.  It dealt with controlled interruption of tx, and how subjects achieved SVR with it.  People were treated, then tx stopped for two wks and then restarted.  It allowed for the immune system to develop a way to keep hcv away.  maybe you did too.  it could be that the interruption and restart is all you needed to get svr.  I will be at work tomorrow and that is where I have that bookmark, I'll see if i can find it.  Two months off tx and you are still neg, is a good sign.  but it could come back  or it could stay down, no way of knowing unless they do better testing.
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