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]

My doc just called - wanted to give me the good news - my 8 weeks PCRs came back UNDETECTABLE! I understand it's only the first step to success and it doesn't mean yet that the virus is gone for sure, but... I am having a wonderful day today. One more thing to be thankful for :)

[sunshines76]

Thank you for sharing your story, Magnum. I am sorry you had to go through that. I am on 15 mcg daily, my ALT/AST are within the norm. I drink tons of water and side effects are bearable. I hope I get through the whole 48 weeks successfully. Today got my 8 weeks PCR tests taken. By the end of the week will know if I have a good present for my birthday :)

[Magnum]

I’m 1a. Instead of the 15mcg (typical daily Infergen dose), the doctor had me on 24mcg because I did not respond to three prior treatments and this time he was determined to clear me. On the fourth month, this caused my ALT and AST numbers to go into the 800's. My urine was chocolate colored, I was jaundiced and headed for total liver failure.

If your doctor gives you the normal dose, you may be fine. My doctor will not give patients even the normal dose anymore. Just passing on what he told me. I would ask your doctor... Best of luck in clearing.

Magnum

[sunshines76]

Magnum, could you, please, be more specific - exactly what your doctor did with you? I suggest from what you wrote that you had to stop infergen? What exactly happened? My other tests show that I've developed mild anemia, so they are monitoring my CBC every week. As for actually feeling any side effects - so far I can't say I feel anything major: hair shedding, light fatigue, that's it, I can deal with it. I wonder if more side effects to come...

[sunshines76]

Does anyone know what is the most sensitive PCR available? I always thought that if you were less than 50, then you would be UND. The test that I was doing, apparently detects HCV at 43 and above. Are there even more sensitive tests now?

[Magnum]

Funny, but that’s exactly what my doctor did with me. However........

I would ask your doctor some very specific questions about Infergen. It is a powerful drug that nearly did me in. Not trying to scare you, but my Gastroenterologist will not use it on any of his patients anymore. This is what he personally told me two weeks ago.

Apparently he has had other patients who had problems with it. I’m no doctor, just a non-responder, but I’m passing on to you what my doctor said to me. What you do with it is up to you, but again, I would question your doctor about the past history of having had patients who may have developed problems with it. Otherwise, the best of luck, and also ask him if you can wait for the protease inhibitors to be released in a year or so...

Magnum

[annieCinMD]

Great news! Keep us posted when you get your 8 week UND!

[sunshines76]

I had my doctor appointment - to review my week 4 PCR. I am pretty happy today - I am still detectable, but the result showed <43 (down from 94,000 before starting infergen). My nurse said it looked like I was right on the border and that at 8 weeks we should expect to be UND.
:)

[sunshines76]

I did my bloodwork on monday, including PCR, this week. On wednesday the lab called me and wanted to redraw my blood. Said they have contacted my doctor already and I just needed to come in for additional testing on PCR only. Noone could give me an explanation why I had to retest. I am looking forward to getting the results next week. It's been almost 5 weeks on daily infergen now. I am feeling ok (if forget about anemia), hoping for good results.

[newleaf09]

You mean how does damage happen from long term exposure?  Search this forum for starters to see what the damages can be.  I stopped reading those because I thought that some of the problems were age-related and people were still pinning the problems on IFN, but it's obvious that that's only the case for a few people.  Others have real damage.  You already know that some people are much more responsive to IFN than others and I think the damage can be just as variable.  The interferon is part of the body's natural immune response and when we add extra with the shots, it ramps our own immune system up even more.  I suspect that it causes autoimmune responses; makes us allergic to ourselves and causes the body to attack itself.  Can cause nerve damage, lung damage, permanent thyroid damage, arthritis.  Ideally you would be on IFN for the shortest possible time, to be sure no systems got damaged by the drug.  It's a miracle drug, but I wish we could defeat the virus without IFN at all.  Research may never arrive at that point.

[ditzybabe]

"The current research goals on HCV Treatment are to shorten TX time in order to reduce the patients exposure to interferon, which can cause permanent damage to the human body from long exposure. "

How does that happen? I've had one form or another of interferon for over three years.

[sunshines76]

It sounds so awesome when you can write "I WAS also 1b". Congratulations!

[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 :)

[copyman]

not sure if you posted this but do you know what, if any liver damage you have? if you don't have any or little why not wait for the new drugs? why put yourself through this when new drugs are right around the corner. The only reason I would think a doctor would put you on infergen is because you have severe liver damage.  Other then that you should NOT be on it. Just my opinion of course.

[sunshines76]

A quick update. At week 16 pegasys + riba my viral load was 94,000 - killed the last hope - obviously I was not responding to this therapy. Last week switched to daily infergen plus riba. First two days on infergen were TOTAL HELL - very high fever, chills, and pain allover my body. Couldn't sleep at night at all due to the pain. But after two days - I am back to feeling normal again. The only problem - my hair loss got much worse. In three weeks will have my viral load labs done... Keeping my fingers crossed.

[sunshines76]

Thank you so much for the encouragement! I know it might take several tries and a long time, but at the end the dragon will be beaten :) I am so glad I found this forum, it's really helpful to see all the stories and what other people have to go through and what they can advise from their own experience. And all the encouragement here definitely helps, a lot.
I talked to my GI doc today, he is suggesting to wait till 24 weeks on the same treatment and then decide whether switch on infergen or wait for PI drugs to enter the market finally. But we are also seeking a second opinion now, with a hepatologist, will know more by the end of the week.
In general, though, life is good. Seriously :)

[nygirl7]

Hang in there sunshine...if you look around in here you will see many people that had to retreat and were successful at last.

One of the things that might have been rather telling for you earlier on is that you experienced relatively no sides.  While it's not scientific to the nth degree...oftentimes this can mean you were underdosed to begin with.  Sad fact with this treatment is that some major discomfort is not a bad thing.

As you have read now early PCRs are crucial.  Myself I was a geno1A and also 1B.  There is no real difference between the two but I was paranoid it would be double as hard to get cured so I over did the riba in a major way.  Still at week 12 I was detectible and it was only at my 24 week test I was UND.  Like Bill I extended (but only to 72 weeks.....he did 96 which still amazes  me).

The point I'm trying to make here is that a lot of us really see tailoring your treatment as really crucial.  That is why early and frequent PCRs are so important...if you aren't hitting the right marks or something you can always try to tweak it up a bit.

Your best bet is to stop and regroup and then attack it again full tilt.  l read the thread but don't see your stage liver damage (I'm at work and always have to rush so I could have missed it easily).  If you have the time waiting another year or two after this long isn't a big deal and the PIs show so much promise.

If you do have later stage then finding a doc who might be a bit more aggressive and up to date on things would definitely be the way to go. You just gotta work on getting to UND by week 12 or if not by week 24.  Completely.

Good luck!

[HCA]

It means that the pegasys can't knock the virus down during this particular round of treatment-like you say the virus has got the upper hand.
That's not the end of the story though-when you treat again the response could be very different,particularly if one of the new drugs is added to mix.
Hep C treatment is racing ahead and you will get to benefit.

[sunshines76]

Sorry, I probably ask dumb questions - but did I understand both your and copyman's posts as suggestions that in my case the virus has probably successfully mutated and now pegasys will not work for me anymore?