Digested the AASLD news, I am bummed too

[dointime]

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.      

dointime                

[mremeet]

What I'm trying to say is that this particluar subject just ain't my bag. Nuff said.

[mremeet]

geterquote: " Mermeet, I had posted some time ago about small vain bleeds on the scrotum for which you had replied more or less little is known about it..."

Wha??? Dude, I never commented on your scrote veins. Mremeet don't do no scrote veins. Please, see a properly qualified and licensed scrotologist to address your concerns.

[geterdone]

Thanks! I guess the word damage was an extreme expression and that the word “alteration” would have been a better fit. Yes, our immune system is chemically altered by taking these meds for a prolong period of time and the possibility of lasting effects after stopping treatment all the sudden. This is where my focus is and I am starting to think what would be the best course of action to possibly head off what may or may not be a permanent autoimmune system problem or problems at the end of tx and how I am going to wean my self off these meds and hopefully allow my own immune system to start repairing any chemical alteration that may have been caused by the prolong use of the meds. I know this may be forward thinking and am sure others are just trying to get through the treatment as I was in the earlier stages of tx but with 12 weeks left I do not want to end tx cold as many before me had and end up with the possibility of any lasting effects of the meds. See my journal as to why I had focused in on the reply to you about immune system problems. Mermeet, I had posted some time ago about small vain bleeds on the scrotum for which you had replied more or less little is known about it, It has since stopped after reducing the riba from 1200 to 1000mg it took about three weeks to completely subside.

Thanks!

jasper

[Whrose]

my heart of support to you now. i feel for your present challenge. you are in a tremendous fight right now and under the effects of these powerful meds. i wish there was an easy answer but unfortunately there isn't. the best we can do sometimes is not enough in our fight and the best our hep docs can do likewise sometimes is not enough.
but i will always hold out for hope rather than despair, positive attitude over giving up, knowledge over speculation, a doc who cares and fights the fight with me over the quack selling me false hope, and bravery over a cowards closet.

you are all of the best in our community and i am awed by your true grit. sleep well and happy dreams to you.
hugs.....Whrose

[Whrose]

i was reminded after consideration of mre's rant (affectionately said) regarding immune alteration from SOC of another interesting fact that liver disease from chronic hcv increases the risk for lymphoproliferative disease. hcv is not only hepatotrophic but also a lymphotrophic virus. although i remember the risk is low ~4-5% (correction requested), the point is that hcv may do more damage and immune sytem alteration in chronic time than SOC. i say this not to scare us but to cause us to consider that chronic infection may do more immune alteration than SOC presents which supports my theory. the incidence of cryoglobulinemia may also represent this link. our immune system may take a hit with this virus as our body mounts a viral defense. the added risk of stimulation of immunopatholgy with SOC or chronic infection represents valid concerns when we consider treatment risks vs chronic viral infection.  the thoughts that hcv has the ability to replicate in certain immune cells is proven. i wonder that in time these sequalae of chronic infection will be better understood.  in fact i look forward to this.

[ladywhy]

That was a help. Thanks so much for responding. I am going to have to sit down with dr. and not let his NP push me around anymore. I did mention Alinia...he said wait and see...
I have to be a better advocate for myself...
Good night and thanks again.
Yvonne