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Hepatitis C Community
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90502 tn?1196367605

OPEN POST

Just wrote a big note to Friole, posted below under "I'm pretty upset" by ohgreat).  Took a chance on an open "question" space.  Here it is ... it's all yours.
______________________________________

Friole, here's what I said below ...

Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.

Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.

I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.

My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.

Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.

I'll try to keep you posted, feeling better now. You are rig
36 Responses
Avatar universal
You are so strong. Thank you for posting.  My total compassion to you on the daily shots.  I am so glad you were able to find some very small needles.  You made a good point about knowing when to quit pushing yourself.  I have that problem too, and so I must almost isolate myself sometimes.  

You did make remarkable progress on the interferon - down to 49,000 but I am glad you and your team took the agressive postion.  Check in when you can. So sorry about the hair.  I guess you have lost more than anyone else I have seen post.
Kathy
Avatar universal
After reading your post about your driving, besides getting glasses might i also suggest you get a humvee.
92903 tn?1309908311
Doc convinced me to drop the riba from 1,200 to 1,000 'till we get the hgb above 10. It hit 10.0 once, but it's mostly been in th 7's, 8's and 9's for months. He's been pretty flexible with me, but I guess he's had his fill. 1,200 is over-clocking on the riba anyway, and I'm beyond the cut-offs for the short tx guidelines, so I guess I'm cool with it. Intellectually it's the right thing, emotionally, I'd be happier with the pedal to the metal till the end.
Avatar universal
Paso: I am very proud of you. You can beat it this time. Have you tried any of the Nioxin hair products? Some folks here say it helps.
Goof: I know how you must feel about dropping the riba. But.... you will still be taking enough to prevent breakthrough(which of course you cannot get b/c you are clear, clear, clear). Here's to some Hgb!
My dose change: Drew a PCR after 4 weeks of double peg. Doubled 2 more and just decided to go back to regular. Well, a month later, the lab says oops, we lost your sample. So now I will wait another month to get any results. I doubt I will ever know if the doubling helped.
Avatar universal
Goof, id keep it quite if i was you on lowering your riba dose, if jim heres about you having a extra pill around everyday. Well he'll be beating your door down. Not saying jim wouldn't be a nice house guest. You just don't want to run the risk of that moth problem.
Avatar universal
Well good for YOU!  You are ONE TERRIFIC PERSON AND A GREAT FIGHTER!

In three weeks depending on my 24 week PCR I may be going the way you are so thank you so VERY much for the encouraging words on the sides with Infergen! All I heard was bad things from people so far. I mean there is no way I wouldn't do it regardless but...You know how great a good report is!

The results with Consensus are supposed to be SO SUPERIOR to Interferon I am SURE you will be a responder to this one I just KNOW IT!  

It's just a shame that for most it's so rough doing the daily.  I am going to remember to ask for the neo-needle as well.  They gave me THREES last time for my Epogen and it's like a freaking foot long it seems to me (but I am too cheap to get new ones until I use them up. Maybe they can be returned I'll have to ask I mean they are in protective wrap LOL).

BEST of luck Paso - keep up the GREAT WORK AND SIDE FREE TX!!!!!!!!

Debby
Avatar universal
Did I hear xtra riba going to waste? What is it with you geno 3 woosies anyway :) Look, if I promise to keep my moths on a leash...

-- Jim
Avatar universal
I am new to the forum, I have just lurked, can't really post at work, and the home computer died and just got a new one.  Have 1A, starting VL 108,000, 1/0, cleared at 12 weeks and just got 25 week pcr and am still clear!  Woo Hoo!  I am really excited the meds are working.  Am week 26/48, no real sides except the anemia and have really started shedding over the last three weeks.  Otherwise I feel fine!  Thanks for all the info over the past few weeks.  It is really nice to communicate with someone who knows what it is like to go thru this.
Avatar universal
xtra riba? riba period-i hate this poison& i'd rather get shot in the foot then take more!..but if i had to,i guess i would
Paso,ONapretty:great to hear good news!!Goofy: i'm sure you are clearin out the bugs,not moths, Goodluck All
Avatar universal
Hey congratulations on your clear PCR's. Gives me a shot of hope everytime I hear clear. Outta be a cah register sound effect to ring out when you type it. WOHOOOOOOOOOOO is right!
Stay well,
Don
Avatar universal
I know it really is poison, but if the poison works, you might as well suck it up and like it.  But more than half way there helps.  Today I was thinking, only 895 more ribavirin to go!  (And 25 more shots of Peagasys, and 25 more shots of Procrit);-)
Avatar universal
I know it really is poison, but if the poison works, you might as well suck it up and like it.  But more than half way there helps.  Today I was thinking, only 895 more ribavirin to go!  (And 25 more shots of Peagasys, and 25 more shots of Procrit);-)
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