Am I a non-responder?

[sunshines76]

Hello! Got diagnosed with HCV, genotype 1b two years ago. Looks like I've had it for at least 30 years now - had a blood transfusion in 1970s... I am now on week 14 of TX (pegasys + ribavirin). Don't feel any side effects at all, except for some mild hair shedding. I also drink plenty of water, and feel very good, actually better than before the therapy. Got more energy. Yet, my PCR test results are ... a buzz killer:
- 3 weeks before therapy- 280,000
- 1 week before therapy - 1,060,000
- week 4 of therapy - 13,000
- week 8 on therapy - 2,575
- week 12 on therapy - 66,742
- week 13 on therapy - 103,000

Looks like a roller-coaster ride to me... Am I a non-responder? My doc is suggesting keep on the current meds will week 24 and then if the virus is still detectable, switch me on infergen.

I am still hopeful... but my optimism is kind of down now when I got my labs done for week 12...

Anyone had the same happen to them as far as viral load climbing up? Is pegasys not working for me?

[Rockerforlife]

In my first round of TX my VL was 25 million,i was at 475 VL at week 12, somewhere between week 12 and 24 i went UD,after 48 weeks of TX and relapsed.I was geno 1a.

[sunshines76]

Thank you for your encouragement! I am debating between asking to switch me on infergen now or waiting till PI will be available. Can't find any trials on Boceprevir going on in Seattle/Tacoma area though... Actually, can't find any trials that would be suitable for me in this area now.

I refused to do liver biopsy, so have no idea what my stage is. But my liver enzymes have always been normal, never experienced any symptoms either, except I have always run 37.2 fever. Got diagnosed with HCV by occasion - when did all my labs before going through IVF treatment. Then picked up my childhood medical records (I was born in another country), and there was a note in my birth chart/hospital release - nonA/nonB hepatitis... I guess, that was it - as I got blood transfusion when I was born as a preemie.

One thing for sure - I will not give up :) !

[Bill1954]

Infergen *might* change the viral kinetics enough to elicit a response; as well as a change from Pegasys to PEG-Intron. I was a late responder in my initial treatment attempt; I didn’t achieve a 2 log reduction at week 12, but missed it by several hundred IU/mL only. Trying so influence statistics, I increased ribavirin intake from 1200 to 1800 mg/day, and increased duration from 48 to 56 weeks, but relapsed within 30 days post treatment.

On second treatment, I was prepared for Infergen, but my hepatologist didn’t have much faith in the numbers it provided. He suggested switching from Pegasys to PEG-Intron; I increased the ribavirin again to 2000mg/day, and increased Tx duration to 96 weeks. This produced SVR (sustained Viral Response) finally, but it was a long road.

If I had less fibrosis, and was in a different time frame, I might have deferred treatment to a later date. At that time, the protease inhibitors were still more theory than they are now. With the final data in from phase three trials, there release now appears imminent. I had late stage 3 damage, and had possibly progressed into early cirrhosis by the time it was all said and done; this amount of scaring can change treatment dynamics, obviously.

Again, talk with your GI or Hepatologist, and get their take on the situation again. You might ask for an additional opinion as well; null response does put you into a hard-to-treat category now.

All the best to you, and check back on this thread early next week to get other views on this… the forum is generally quiet on weekends.

Take care—

Bill

[sunshines76]

Wow, I can imagine how it felt to see your test results showing you relapsed after the tx was done. How are you doing now? Are you participating in any trial now?

[Bill1954]

Unfortunately, it’s possible to progress into and through significant damage, and even cirrhosis with normalized liver enzymes; these just aren’t an accurate way to predict damage. About 30% of HCV patients present with in-range AST/ALT.

If you cannot undergo needle biopsy, even one of the so called ‘surrogate’ blood tests such as Fibrosure/Fibrospect might give you an idea of your grade and stage of disease. I haven’t heard much positive feedback on these tests; but they may be better than a guess.

Are you seeing someone at University of Washington now?

Again, nothing but the best—

Bill

[sunshines76]

Really, I am ok with a long road, will do anything to get rid of this annoying HCV... Your story is very encouraging, Bill! Did you have 1b genotype?