calling all non-evr s who achieved svr/'cure'...open thread

[cuteus]

I will try the post here, in hopes that some svr are still in touch or know of a link to get this info.
Well!! after the lab screw up and the re-test on Friday I finally have my 24 wk vl (on week 27), it took them 4 days to process it!
Undetectable!! and on the day i was feeling like s***! On with the fight for 21 more shots. They will only do 48 wks, should I insist on longer since i did not clear at 12wks? and on that thread: has anyone here not have an evr and still become svr?
i am geno 1a, and get depressed when i read all these evrs at 4 wks, i have read the stats on evr and fear that after this long battle, i might relapse. anyone out there not evr, geno 1, and attained svr?
need some more hope, the tx sx are bad this week.


ive

[PhilaGuy]

Does anyone have any experience with Cryoglobulinemia?  Apparently, half of HepC patients have elevated cryoglobulins in their blood, which are produced as an auto-immune response to the virus.  Most have no symptoms, but I think I might.  My legs ache an awful lot, and my hands just go numb at night - seemingly two symptoms of Cryo.  What's everyone else's experience?  Is it possible these are just symptoms of HepC and not Cryo?

[BusterBrown]

To Cuteus and anyone. I am interested in this as well.  I just finished 48 weeks on Jan 2 and since my doctor never did a 12 week pcr I don't know how to judge if I had an early response or not either.  I was negative at 23 weeks.  Can you go by ALT at 12 weeks?  Mine before tx was 105 and was 28 at week 12 (ref range 0-60).  Does normalization of ALT indicate a good response?  I also am a 1a and wondered if going longer than 48 weeks was worth it but it is too late now and now the depression and worry are setting in since I have been off tx.

[layla]

I am not an SVR but I am doing extended tx. I'm on week 44. It's hard to even think of some days. I was not undetectable at 12 weeks but I did have a 2 log drop. My tx started on a lower dose than I should have so this is also factored into my decision but mainly becasue of the "detectable" at 12 weeks.  There really isn't alot out there on this and I think it only increases your odds a small % amount but for me that's enough and that is the route I am going. I handle my sides fairly well so that helps too. I email with 2 others (not on this forum) doing extended tx also. One has been on dose reduction and that is the reason. We have all discussed this with our docs and it's a done thing for us. My doc said if my sides get bad I can just do the pegasys but I hope to be ok. It's really a personal decision since there isn't enough info on it currently. The few studies out there are not very good either but many doc are going to 48 weeks from clearing. I just couldn't do this again so I am just going to do it now. I have to say now that I am near the 48 week mark mentally some days are very tough.  LL

[Revenire]

cuteus -

I'd do 36 weeks from the time your test showed undetectable.

My reasoning: Some doctors suggest to stop tx at week 12 if you don't have your 2 log drop because your 'odds' drop to around 2-3% if you don't get the 2 log drop by week 12 -- well, I say that's garbage -- some patients take longer to respond, some relapse and achieve a SVR on retreatment, some respond to a different peginterferon or consensus interferon, some who do not have a viral response can hold back any progression of the disease through maintenance dosing, etc.

Therefore, to eradicate any lurking virus, I'd do 36 weeks from the date you were declared undetectable.

Ask your doctor about it, and get another opinion. GI.PA may have thoughts on this ...

Buster -

Normal ALT are a great sign that tx is working. What did your biospy show?

Layla -

How long are you going to go? I did 50 weeks at full dose peg+riba then immediately switched to a half dose of peg alone. Frankly, I'd have done 72 weeks of the whole thing to increase my odds of a SVR. Once I crossed the 48 week barrier, was undetectable all the way through, had my EVR, etc. going on wasn't that hard. I am beat but since I stopped the riba I feel better -- that is some nasty stuff.

For me, the 40s were the hardest -- it just gets tougher.

I think you've made the right choice and it sure can't harm your liver by going on can it?

[BusterBrown]

Biopsy in 1999 showed 2-3 with some slight bridging.  Intial VL of 10 million. Hopefully it will work.  Never did any dose reductions and was 99.8% compliant. I did miss one morning dose that I am sure of.

[Sambone Martian Ambassador To the moon]

I was/am a 1b. I was on tx for 56 weeks.at start I had a vl of 6.5 million at three months I had a vl of five thousand. Pretty good drop huh? but still not a <5. at six months I was <5 or undetectable and stayed that way. I am due for my six month post tx blood work on the 12th of january. That will be my first test since ending tx. I am thinking that since the pain in my side continues to subside. also that i can feel my liver getting smaller and smaller to the point that I can hardly feel it poking out now that I am probably still clear. I had such horrible sides that I wanted to stop continuasly throughout tx. It got so bad that I could hardly walk to the icebox to get something to eat or drink.Now I feel better than I have in many years. hang in  there and make it one day at a time. Just remember that one day you will look back and this will seem just like an old nightmare that you had along time ago and can just barely remember.

[layla]

It was good to read your post. Sometimes this choice is a bit lonely and difficult as you must know. I agree the 40's have been hardest but I am hoping it'll all be a memory soon. One day, or more ccurately said, one week at a time. I am scheduled with my doc for 60 weeks of tx. He did say if the sides were very bad I could switch to peg only. I'll try to hold out.
Martian, wish you the best on the post tx. LL