Comfort from my peers (all of you)

[Sherryz7]

U guys and gals are awesome!  Yes, I am genotype 1. I have taken a holistic approach to my health, so I am actually feeling pretty good. I quit smoking last September and that helped tremendously. So I am gonna talk to my doc about tx again soon.  I didnt get the procrit last time cuz it's expensive. I still have almost all of the incivik, so I am gonna apply for pt assist thru the manufactuer. This crap is not gonna beat me! I just have to stay away from germy people. lol that is where I got pneumonia.

I really need u guysand gals, I look forward to your replies, and it comforts me to know I am not alone in this.
If anyone knows how I can get help from a specialist here in Wichita on any kind of study, etc, I am open for suggestions.

[can-do-man]

Hmmm

[willbb]

Thank you for your kind comment stomy. I hope you and hubby are doing well .Alway nice to see you posting..

Best..
Will

[BoceprevirGal]

Hi Sherry, good for you, for quitting smoking, this will help alot!
      While I am on Tx, I do try to avoid indoor places, that have young children in them, but I have survived being coughed on, at a movie theatre, and a few stuffy minutes, at "Back to School Night" at my kids' school, until I scoped a family with 3 of their babies with runny noses and coughs, and then I ran out of there!
     Sorry you got sick, Ihave read about many people on this Forum, getting respiratotry infections during or after the Treatment.
    I think many people are confused about how many days you took the Incivek for, and the debate above seems to be retreating, with Incivek.
    My guess is you were only on the Incivek for about 10 days when your severe anemia occurred, and they discontinued you?
    

[stormy456]

This is interesting...  I know that up until fairly recently "they" were fairly adamant that patients not try to re-treat with the PI's.  Now they're not so sure?  I guess that's good news, I'm sure they're gathering much more data the longer the PI's are on the market.  Thanks for your always knowledgeable and supportive posts, Will.

[willbb]

IHi..

If you have recently done therapy with the "protease inhibitor " Incivek it is not recommended to repeat  such therapy with the same class drug until  there is more knowledge garnered about possible resistance issues

As suggested above  only a doctor very knowledgeable about the treatment with that the class of meds and subsequent resistance you may have should advise you ..

This post below was one we discusseda few days ago to another member.
-----------------

The resistance issues currently is a grey area that they just don't seem to have the full handle on yet but are working on it because as we know some will fail these two drugs(again not you)

Because this is the same class a doctor most likely "would not" want to try another protease  because of this.

Plus it would be like basically trying the same thing again and what is the point.

The interesting thing is that if one fails a protease it very often is their "insensitivity to the Interferon that is the problem and in cases of protease failures it would most likely be best to wait until INF free is on the market.


Best of luck..
Will

[hrsepwrguy]

Great advice above and good luck moving foward

Rescue med assistance
US Specialty Care
Karol Seidel
7472 S. Tucson Way Suite 100B
Englewood CO 80112
800-641-8475
fax [phone]

Have a great day

[flcyclist]

I'm a bit confused on the timeline of tx and what you've used in the past 2 attempts.  It appears from the following thread that you were on Interferon/Riba and had a Riba dose reduction to 200 mg.  Where does the Incivek come into play.  As Idyllic stated above, did you start, then stop due to bad side effects and therefore had plenty on hand?  Also agree on getting a very competent hepatologist to guide you through tx rather than your current MD.  This being your 3rd attempt, you want to do you best to make sure this is your last round of tx.  Good luck.

http://www.medhelp.org/posts/Hepatitis-C/Hep-C-undetectable-after-12-months--now-ALT-AST-elevated/show/1761774#post_8102832

Please clarify if you were using incivek, when and how long.  

[can-do-man]

The link for above,

http://www.natap.org/2011/EASL/EASL_34.htm

[can-do-man]

Idyllic is spot on about retreating again this soon with Incivek, please find a good doctor that has been treating people and know about these past trials. As for procrit there is help with getting that paid for. Hang in there, wishing you the very best.

http://www.natap.org/2011/EASL/EASL_34.htmfrom Jules: this presentation/data is based in part on a model predicting when & if mutations/resistance will disappear & not be very relevant or relevant at all. The general line here is that after 1.5 or more years resistance will not be relevant & you can retreat with the same protease because unlike in HIV the mutations do not integrate into the genome & aren't archived forever. The other minority view among resistance researchers I have worked with since 1996 do not accept this notion. At the very least their position is, and I agree, we don't know what will happen in patients several years from now after failing HCV protease inhibitor therapy, the worst potential scenario is if some patients will likely remain on failing regimens for prolonged periods of time while the recommendation will be to stop therapy very early if failure is observed and patients will be required to come in to check viral load after being on telaprevir for 4 and 12 weeks and with boceprevir likely 8 and 12 weeks. We will see.  

[Idyllic]

I am uncertain if it is possible (or advisable) to treat again this soon.  
Is there a way you can schedule a follow up with a different Gastro?
It may take a little leg work but hopefully it would be with someone who is knowledgeable in treating HCV.

I gather you recently completed a year of treatment with Peg & low dose Riba. How long did you take the Incivek?

Did you start originally start treatment time with Incivek, Ribavarin & the Interferon (i.e.m Triple Therapy). And then stop Incivek due to the side effects? Or what?

I am not sure what the time frame however I believe it is difficult to resume Invcivek due to some kind of resistance.

I would try to find a way to fund Procrit because Incivek can cause haemolytic anaemia in addition to the Ribavarin. That way you would be able to take the HCV medication at the proper dose based on your weight.

As I said, this may be premature or possibly even moot. Hopefully others will chime in and offer their insight and experience.

I hope you are doing OK. I sure admire your spirit!!