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?

[sunshines76]

Once again, even being on infergen now, daily shots, I feel pretty well, better than before tx. It was only the first 2 days that were really tuff. It's unbelievable, but I have MORE energy now, while on treatment. Before treatment I used to feel so sleepy all the time. And now I am full of energy - I have enough energy to spend very active days with my 2-year old twins, while my husband is deployed to Iraq, and I don't get much help from anyone.
I know it sounds incredible - I've read so many responses stating how hard tx is for some. Not for me. I guess, this is the main reason while I agreed to try infergen.
Another reason being - I have a great health insurance that covers all expenses, so I'd rather try to get rid of HCV while I have this insurance - who knows how long we will be able to keep it.
If infergen helps 15% of non-responders, who knows - perhaps I will make it to those 15%. If I am lucky, that would mean that by the time my kids turn 3, and my husband is back from Iraq again, I won't have to think of going through another tx, but rather can have tons of fun with my family.

[jacksonblue]

I was also 1b

[jacksonblue]

Hello sunshine i must agree with copyman if possible i think you would be better to wait for better treatments . I became so determined with getting rid of this viris treated 4 times in 10 years it consumed my life at times i think i treated to agressively and wish i had stepped back and thougt things out .The last treatment seams to have worked in 24 weeks only with tvr .BEST OF LUCK with what ever decission you make regards steve

[copyman]

sunshines76:

Glad you are feeling better.
Sorry to beat a dead horse but I just don't see any benefit in subjecting yourself to infergen for 12 weeks after not responding to SOC treatment. Did the doctor what the benefit was and what is his plan if you do clear after 12 weeks? Since you didn't have a liver biopsy the only way would be is if your labs showed signs of severe liver damage. Maybe someone else could chime in but I don't even think this is standard protocol without severe damage?
The new drugs will be out in 2011.
PS, Once again this shows why a liver biopsy is so important in helping to make treatment decisions. If you knew you didn't have any or minimal liver damage you could feel confortable stopping and waiting for new drugs.

bee1236:
Yes you can still treat without a biopsy but it can really help in your treatment decision. A perfect example is what you see in sunshines case above.
The liver biopsy is painless and over in less then 5 mins. I only had some shoulder pain for a few hours after. good luck

[bee1236]

by beatriceBee

just diag w/ hep c 1a all normal blood test, sched. for liver biop. hear u dont have to take one, will u still b eligible for treatment?

[sunshines76]

I refused to go through liver biopsy, so basically don't know how damaged my liver is. What happened was we actually scheduled liver biopsy and then the day before the procedure I started panicing, got really scared to go through it. Which is really funny, because I am usually pretty calm and don't feel scared about medical procedures. Went through 3 major surgeries in my life... But this time I was really scared. And my doctor said there was no need to go through it if I was so scared.
As for infergen - I am doing ok now. Became slightly anemic, have fever, but nothing like what I experienced during the first two days on this drug. Once again - I am feeling ok, so will try to go to at least week 12 on it and then decide based on the results. My doctors said that they will get the new drugs in 2010 for trials, so if infergen doesn't work for me either, then 2010 it is :)