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Avatar universal

Digested the AASLD news, I am bummed too

Hepatitis researcher wrote in a previous post:
"Not only would Protease +SOC for clear nonresponders not permanently eliminate the virus but something much worse will likely happen ( to quote as mremeet has properly pointed out some hundred posts ago:  " you will be saddled forever with resistance mutations against this treatment component").: This archived resistance mutations against telaprevir would make it impossible to clear the virus at that important future moment  when finally the next chance to treat with an inhibitor combo like Protease + Polymerase +maybe Nitazoxanide will become available that MIGHT, JUST MIGHT give a decent percentage chance to clear despite the preexisting IFN resistance. These are one way roads, just like you cannot normally shake  interferon resistance, you cannot shake off specific antiviral resistance, once it is established, EVEN IF A SEQUENCE TEST WILL SHOW THAT YOU HAVE RETURNED TO WILD TYPE AND NO MORE MUTATIONS CAN BE  "FOUND".

So this is the first authoritative confirmation of what we suspected, ie. that  telaprevir could be a one-time shot because of being left with drug resistance.  Not only that, but any other drug with the same resistance profile is off the menu once specific antiviral resistance is established.  Might that mean any other ns3 PI?    

I was in a Prove2 no-riba arm, failed tx with a breakout and now have VX-resistant mutations.  I was just coming to terms with failing tx.  Now I've got to get my head round waiting for some other drug beyond VX that can kill those mutations.  When I did the trial I knew that the tx could fail but I didn't bargain on f***ing up my future chances of a cure for years to come because of it.  That was definitely not explained and if it had been I wouldn't have done it.  

Well, too late to whine about it now, but I am really pissed and I want to highlight for others entering a trial what the consequences might be.      

64 Responses
217229 tn?1192766004

I don't wish to sound like a ninny -- for I am beyond lucky... But a trial is exactly that... A trial.

They do NOT know what is going to happen.

Anything - including death can happen at a trial.

I do not believe in trials for me.

I do not think I would be in the first groups of humans to test out a product --- I'm sorry. I just don't have that much faith in human science... YET...

There will be a time in the future - that humans will understand how we are exactly created - and what substances will do... They will understand the chemical components and they will be able to see more clearly what future results will be.

Until that day - however - trials are shots in the dark.

No one knows what will happen ---- for good or for bad... and how far in the future.

When you do a trial - you should know that.

You might cure --- you might die --- you might never be able to cure --- you might become INF resistant - you might cure half way then get another disease.... and so on ad infinitum.

I'm glad you are warning others - but you should not be so angry for yourself.

Keep your chin up --- and your hopes out...

There will someday be a cure.

212705 tn?1221624250
I was at Hep Dr. on Wed., I barely read about the conference before the appt. What I did ask was would I be considered interferon resistant?...He said NO...I am a slow responder. BTW, he was at AASLD. I don't know if he was playing golf, or downing shots at the bar..but. I am 35 weeks (or so) double dosing 2x a week...my last pcr showed a vl 1350...down from 45000 4 wks. b4. He gave the impression I should be happy....I asked about Alinia...he said maybe down the road..if necessary. So here i am double dosing...weight based should be taking 1000 mg. riba but an overdosing with 1400 mg.....and feelin' some rage today.
I feel like I'm between a rock and a hard place. I have just about had mor3e than I can take today...i can't seem to find a point for anything. Woe is me.
Avatar universal
No disrespect to anyone, but I don't think things are necessarily as black and white as presented and the idea that you may have f*cked up future chances may not be correct. Please take your concerns to your doctor or another specialist and have them review your history against what is coming out of AASLD, including the resistance issue. I would think that if the repercussions of failed triple tx were that bad we'd be hearing more. At least don't give up hope without exploring things further.

-- Jim
223152 tn?1346981971
would you mind giving me the address of the thread -- I can't find it
Avatar universal
Did you say you've been double dosing for 35 weeks and you still have viral load of 1350?
Avatar universal
Have you gotten another opinion on your treatment? I forgot your stats, but I believe most stop at week 24 if still detectible unless you're treating only to improve liver condition as opposed to having reasonable odds of SVR. Also, never heard of anyone double dosing that long.

-- Jim
212705 tn?1221624250
No...I started DD at 26 weeks..@ 10 -11 weeks upped riba from 1000 to 1400mg.  I Have asked to stop tx....Hep Dr. (Director of Hep. Dept at a University Hosp) says...he cannot advise that at this time....
212705 tn?1221624250
Be gentle with me fellows...I'm having a very rough day.
Avatar universal
Avatar universal
My thoughts are with you. I can see you are having a difficult time.
Avatar universal
Trials are trials, yes, but the arms without ribavirin seemed to be a lost cause from start. I understand dointime's reaction. One would think it is not too much to ask to have the risk of resistance explained ahead of entering a trial.
220090 tn?1379170787
Dr D told me that one of the PIs in trial, I think the one from BI, goes after a different sequence in the RNA and would be effective with people resistant to Telaprevir.
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