As another recent 1a relapser I am reading your answers to RTS with heightened interest. If I read correctly, the most effective way may be to use non-pegalated interferon and increased riba if necessary to achieve rapid intense suppression.
I started with 1.52 million IU/mL. At 4 weeks it was 2820 IU/mL and at 12 weeks 40 IU/mL (QuantaSure sensitive to 2IU/mL). My first UND by sensitive PCR was at week 20 (QuantaSure) (had a UND test at 16 weeks but it was only to <50) and was clear throughout the rest of a 56 week treatment. My 3 month PCR was 680,000 IU/mL (QuantaSure). (100% compliant)
My start weight was 173 and I took standard Pegasys and 1200 mg Ribavirin (Copegasys until switched to generic by the insurance co). My weight dropped as low as 153 during tx so I was overdosed for the riba most of tx.
Now what? My SOC GI will suggest daily infergen (appt on Thurs). I have an appt with a hepatologist in Dallas in April. Should I wait to confer with the hepatologist? Should I try infergen now? Both my ANC and HGB dropped during tx but I didn't have many of the severe side effects I hear others refer to and suspect I was underdosed with interferon. I am trying to gather all the information I can before Thursday's meeting. By the way, my biopsy was G1/S1.
frijole
Thanks for the clarification.
In Mike's case, I believe he was detectible only by special tests done on liver cells, not by tradtional serum VL tests. RTSs post was somewhat disconcerting as he apparently relapsed after being non-detectible 3 months post treatment by Heptimax. He mentions some dental surgery as a possible cause. I have a tooth implant procedure coming up and while my rational mind says no problem, I'm playing around with the idea of delaying it until I've been viral negative for at least a year. Right now It's nine months.
-- Jim
It's always a little unsettling when something that "should" have happened doesn't. RTS "should" have been non-detectible at six months based on being non-detectible at 3 months. They correlate very closely, but still not the same thing.
If RTS had said he relapsed 3 months after SVR (the nine month mark) then that would have been really unsettling since it would challenge the durability of SVR.
I remember emaling my doctor that I was about to pop the cork after my 3 month post tx SVR. He emailed back that I shouldn't celebrate just yet. I guess relapses between the 3 and 6 month post mark, while unusual, do happen.
I'll see about delaying that dental surgery as I'm only about three months from the 1 year mark. I think my chances of relapsing after that are worse than being hit by lightning.
-- Jim
I am of course referring to the couple of cases that were highlighted in the HCV medical press in the past few years where patients were placed on immunosuppressive medication therapy for other disorders, and saw a full return of the HCV virus in their blood and liver. I think one person was an SVR for over 8 years, and had documented PCR negative blood tests many times over the years since their SVR. The other was a similar case where the person was a 7 year SVR, and saw the virus return after doing immunosuppressive therapy.
Now some of the doctors that I know would interject that maybe these persons were somehow 'reinfected' with HCV, but that seems to be a very weak response to me. Both cases were identical, and both individuals redeveloped the HCV viral positive state, by PCR, after immunosuppressive therapy. In your wildest dreams would you think that these two people, many years SVR would be playing around with HCV infected drug equipment....and doing immunosuppressive therapy to boot???? In my book, that is a relapse. These cases also demonstrate the concept that the virus goes into 'remission' after SVR, rather than eradication. Both cases should be fully investigated by the HCV medical community (if they are interested in really knowing) in order to validate or to cast doubt on the viral persistence/remission theories that have become popular. If they see reason to question the relapses in question, then I would like to hear what it is! I have heard nothing to the contrary from any HCV experts to date.
I do believe that Mike Simon recently dealt with a minor episode of this sort of viral behavior, where immunosuppressive meds caused a flare of the virus in the liver,after being SVR, for him.
DoubleDose
Boy these are difficult decisions, not like what's for dinner tonight?
Greg retreated within weeks of his relapse. His VL came back at only 3,000 so his doctor immediately ordered another PCR and it came back at 100,000+, clearly it was on the upward move.
Greg was very aggressive in retreating, not really sure why, I think those are thoughts that only run through the mind of the person who is faced with having to make the decision. He's a quiet man, didn't say a lot about it or why he chose the Infergen and the dosing strategy. We did discuss options but in the end he seemed to have his mind made up. Greg did say that once he had made the decision he felt better about doing it, I guess getting your mind made up is the hard part.
We think improved liver histiology, low VL and quick aggressive retreatment led to this undetectable status. That's just a guess though. He did just get his 6 month PCR back (this time we waited 26 weeks to do the test rather than 24 weeks) and of course, we are cautiously optimistic since he relapsed at 1 year last time, but our hope is that it couldn't happen twice.
I wish I had some words to help you. Just know that so many care.
Hoping for you and yours,
Debbe
DD:If you know of any approaches that seem to be of help, please do let me know. I fear doing anything that might 'retard' the immune system, knowing that the few late relapses out there seem to have come from that very same type of medical treatment.
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Could you please expand/clarify what you mean by "doing anything tht might 'retard' the immune system". Are you talking about drugs, alcohol, diet, what?
What "few late relapses" are you referring to? Are these post SVR relapsers? And if so, are you talking classical relapse, i.e serum negative to serum positive, or are you talking about finding virus in compartments other than serum post SVR?
I mention this because it still appears that relapse -- as defined by finding virus in serum -- after SVR is quite rare.
All the best,
-- Jim