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Have you considered a quick re-test PCR to reconfirm the positive test result, and to see if the VL quantity is staying at about the same level? There have been a very few cases, reported on the forum over the years, of people going positive for a short period of time, after what appeared to be successful tx, and later going negative again, thus getting the SVR. I really do not remember who the members were, but their experience in this regard really stuck with me. It seemed pretty odd. But now, in light of what we know about residual virus, and the immune system taking control, thus putting the virus into 'remission' maybe those cases were not entirely strange after all.
The next thought is, that if your VL stays low as it is now (66,000 to 100,000), might you be in a position to quickly treat again, get it to undetected, and run the tx out to an extended length (as compared to your previous tx)??? Would you be up to another tx, on the heels of this most recent one?
Just some additional thoughts.
DoubleDose
Yesterday several school children lost their lives on a school bus. In a moment, their life was over. All we have is right now. And so, hold on to today, tomorrow will come soon enough.
Remember that several people that have never seen you will be thinking about you.
Jim
Wishing you the best.
When you said " cleared the virus at week5" was that therefore solo on alinia?
What test was used?
Did you have weekly PCr tests or was week 5 your first test?
Please clarify. Alinia might, just might be a big hope for many patients here , what is needed is solid info, as much as possible , so that decisions can be made on an increasingly meaningful basis. Any Dr. can add Alinia off label to a regimen, no trial needed, but will only do so if enough info is around to warrant such a decision....
Kittyface
For me, I wanted to get right back to killing it before it had a good foothold and I restarted tx right away.
I know you will decide the best course of action for you. I'd retest to confirm first. Keep in mind all the good the tx did, you suppressed the virus, you feel good physically. The mental blow is tough, but you are tougher!
:(
Best of luck to all of us. It seems to be a cr@p shoot.
I do agree with the others that you should re-test right away although at 66,000 IU/ml, I doubt you got a false postive the first time. As to re-treating right away, I think an awful lot depends on how much liver damage you have. If you have little or no damage, maybe you should give your body a rest and take a look in a few months on how the newer trials are going. VX-950 SVR data should be available in less than a year. Alinia sound promising but so little data so far, and the only promising data has it combined with interferon which IMO is worse than ribavirin.
All the best,
-- Jim
But they are right,.....you did give your liver a break.
Give yourself a break too. You deserve it.
I did full and maximum Riba in my second, 18 month tx, and used two shots of Procrit a week to keep from falling completely down the anemia 'pit'. I still became fairly anemic, even with 60,000 IU of Procrit/wk, over the 18 months, but I think that the Ribavirin kept me from relapsing. It really messes up the viral reproductive capabilities, and 'warps' its genetic profile, to use a layman's description. Please do not underestimate the importance of the Riba, as noxious as it is.
Take advantage of Procrit, or the longer acting red cell boosters, and keep the Riba at full dosage when you do your next round.
Best of luck!!! Keep the faith!! Many of us relapsers are now SVR. You will be as well. You ARE a responder, so you can get the SVR for almost certain. Sorry you will have to do it over again, but at least you can be very optomistic about the projected outcome. Stay well, and enjoy the holiday.
DoubleDose
DoubleDose
I just made an appointment with a hepatologist in Dallas for April 23rd. Quite far away, but that's okay - it will give me time to research and think
kathy
Beagle
My best to you and everyone on this forum. We shall become SVR!!!!!!
One positive is to note that you reponded, and responded well. Being a non-resonder would limit your options going forward.
I hope you find some comfort in knowing how much we feel for you. Best wishes.
Stay close, Be well,
Don
But don't get discouraged to fight this dragon ... just try to think positive and may be you at least reduced your fibrosis.
Stay strong
Keep the faith!
At times like these, I always think of the words of my drywall guy/local philosopher: "Thngs are never as good as you hope for or as bad as they seem."
With warmth and wishes for good health to you, Algie
Susan
I just read somewhere about a high percentage of SVR rate when retreating within 6 months of stopping tx. I got it at home and I am at work. I hope I remember to look for it later...remind me?
take care
You may want to consider doing what I'm doing, which is to regroup and recover from tx battle while considering alternatives. If nothing else, it's kind of nice to start feeling like a human again and clearing some of the fog helps in considering one's options.
kathy
I do not agree that you would have a 25% chance of SVR, by the way, if you do 72 weeks!!! That seems like an 'out of the hat' response by your doctor. If you were to get another RVR, or close to it, and go the full 72 weeks, at full dosage of both Inf. and Riba, I will bet your odds of SVR would be closer to 80% or better. Length of tx AFTER getting undetected seems to be a critical element for many type 1's out there, and it might just take you 14 to 16 months of being clear, and doing full doses, to fully achieve the SVR.
The Riba part of the equation is also very important. I take it you are somewhat heavier than you should be. If there was not enough Ribavirin getting into your system, and not enough of a heavy move into anemia, then you might have been seriously underdosing the Riba! Your system may not have been fully metabolizing all the Riba. This is the component that prevents relapse after ending tx undetected.
I think this is an issue to fully explore, in and of itself. Procrit is there to help people through tx, and not sacrifice the Riba induced SVR capabilities which are only produced at full dosages.
Your doc should be more optomistic, and offering a solid alternative strategy, while pinpointing the factors that could be adjusted in the next go round to produce the desired result.
DoubleDose
"Your doc should be more optomistic, and offering a solid alternative strategy, while pinpointing the factors that could be adjusted in the next go round to produce the desired result."
I think this is great advice you gave. We all need a doctor like that!