My next Hep C treatment

Hi there everyone.  I've been lurking lately.  Sorry about that.  I have to have a microdiscetomy done here sometime in about the next month.  After I've recovered from that, I'll be starting up on treatment again.  I know, I've treated WAY too many times probably.  And most of you probably think I'm nuts. I changed doctors.  My last doctor that I've had for years kept on cutting back my Ribavirin wheneven my WBC's and RBC's fell instead of leaving me at a therapeutic dose and giving me Procrit & Neupogen.  I asked him about this other medications and he never wanted to prescribe these.  Anyhow, he had retired, so, I had no choice but to find another doctor.  My new doctor says we can try again if I want since my LFT's have increased alot.  After I've recovered sufficiently, I'll go on a higher dose of daily Infergen (if the insurance can be convinced to pay for it) and the RIBA.

Take care everyone,

Susan

[Dirac]

You are so brave and I support you 100%. I wish you the best of luck. What you are saying about cutting the ribavirine might be the real reason for you not to achieve SVR. I had the same problem when I was on treatment. The nurse told me that the doctor is going to lower my dose after my whitel blood cells went down. I insisted to get neupogen prescribed for me and kept the same dose of 1200 ribavirine daily. It worked and I am an SVR now. Go for it and we all here are praying for your success.

[zo]

Go on Susan,and you get it.I understand what you are feeling,because I had also to do three treatments,and the last was for 18 months!I had to stop also riba because I had too much anemia and my doctor did not think I could  put up with it.
So my last tx was only pegylated interferon.
Now ,I stop a month ago and I did my first PCR post tx,and it was negative;maybe it stays negative!
So you have not to feel down...in the end,we succeed!
I am praying for you

[scruffy]

Susan, sending you to fight HCV is like calling out the Marines.You destroy that sucker this time and be done with it! You're a HERO lady. frank

[mikesimon]

I did TX for the better part of 4 years. The last course was 72 weeks and it looks like that did the trick. You've done far more than I and all I can say is you're one tough lady. I wish you the best this next course. I'm rooting for you all the way. I do think that if you see an early and positive reponse supplemetation rather than dose reduction gives you a far better shot at success. Mike

[bon_vivant]

Susan;
I don't think you are nuts, I think you deserve a metal of honor for your stamina, & determination,..
Bless your heart, I hate that you have to go the infergen route, but am glad to see that you are not giving up!

Maybe our new generation of infergen users will tell us that the sx eventually level out! Lets keep our fingers crossed for them! By Golly, you're  a fighter, & gonna beat it this time... I just know it!

dirac:
I honestly believe that cutting back on the riba, or improper dosing of the riba is directly related to lack of SVR.

I was on 800 when I should have been on no less than a 1000 all along, & when my white cells dropped, they cut my Riba down to 400 (their reason being that the insurance wouldn't cover the neup) However, I was on medicaid back then, & since then we had our marriage legally recognized, so I am now fully covered under Robs blue cross / blue shield... the co-pay is higher, & I had to pay the 500 deductable up front when I picked up my first script... but heck, at least I already have the neupogen, & or the procrit pre-approved this time (should the need arise) I hate dealing with insurance companies & watching them worm their way out of paying something that can make or break our TX...

Anyway, just my opinion about the Riba, But it confirmed it for me when the new Doc flat out told me "point blank" that the lack of Riba, & lack of extension was my downfall... Who really knows...Time will tell I guess!
:)

[DoubleDose]

Susan,
In light of your past high-dose inf. tx history, along with your deficient Ribavirin dosing, I believe that you really need to be prepared to 'super-dose' the Ribavirin, ALONG WITH, very high dose Peg-Interferon.  I do not remember whether you used Peg-Intron or Pegasys prior to your Infergen/Gamma tx, but I would suggest using whichever one you have not used in the past, or if both, then whichever Peg has shown the best viral load declines for you.  My problem on my first tx was that the Riba had to be reduced, and I subsequently relapsed after 14 months of tx.

As you may know, I finished my 2nd tx round about 18 months ago, after doing a year and a half at double the standard dose on Peg-Intron (which I think is the stronger of the two Pegs), and full dose Riba.  I needed lots of Procrit, almost from the beginning, but it did the trick, and I got the SVR.  I now believe that the Riba plays a very significant role in the load reduction process, AND the ability to avhieve SVR.  The recent research article which demonstrated a very high SVR rate for patients given 'super-sized' Riba doses, using heavy Procrit, points this out.  Maybe you need to stick with the two proven agents: interferon (at high dose throughout the tx) and Ribavirin, at even higher doses than prescribed for your weight in a standard tx situation.  If you started out doing 2x dose Peg-Intron, and high dose Riba, you would know very quickly whether the regime was working.  Your 4 week and 12 week viral load tests would verify whether the tx were destined to work.  I personally do not believe in 'induction' dosing, which means reducing doses AFTER an induction period.  If you are going 'high dose' I think it needs to REMAIN there, until the end of tx.  There are enough meds to mitigate problems today, especially Procrit (which I depended on), and AD's (which I never used), etc.  

Keep going for the 'WIN'!  Don't give up yet for the maintenance approach.  You may well be able to eradicate!!!

Lots of Luck!!!

Doubledose