To Do Treatment Again

[SteveHepC]

Genotype 2b

12/20/03 – Viral Load Serum >5,000,000
1/15/04 – Began Treatment – Peg-Intron & Rebetol
4/13/04 – Serum 122,000 – He changed that to partial responder.
1/26/05 – Serum >1,000,000

I have had normal AST, ALT, Total Protein, Albumin ever since treatment – Almost 3 years

11/8/07
AST – 42
ALT - 38
Albumin – 4.7
Total Protein – 8.3
B-12 – 425
Ammonia levels are normal – although I do experience “Brain Fog” sometimes.
Viral Load Serum >2,000,000

I’ve never had as biopsy due to being on Coumadin due to a mechanical aortic valve, however CT scans and MRI’s done 4/2005 show no ascites, no liver abnormalities/enlargement, no spleen enlargement. It’s my understanding that low Albumin or low Total Protein might indicate liver damage, but mine are in the high range. I had a terrible time during treatment, and do not want to go through that again if it can be helped. I drink plenty of water, my urine is pale, my stool is normal colored, there is no fatigue, and no jaundice.

I need opinions on whether or not to do treatment again. I’m 68 years old and otherwise in good health. No high blood pressure & cholesterol is good.

[hairtamer]

Thank you.  I receive a flyer from Liver Hope every month since 2000.  They sent one in January '05 stating that hormone replacement therapy showed result of slowing the fibrosis in women.  Well I chose to do menopause naturally starting in 2000 and I think that statement is accurate because of how I excellerated from mild, minimal fibrosis, 200,000 VR in '99, to stage 2, grade 2 with a VR of 11,900,000 in just 8 years.  I still need to find the right HRT, that is next or soon.  That is why I am in tx now.  I will keep you in my prayers.
In Jesus, the Reason for the Season,
Rose

[SteveHepC]

Rose;
Before treatment...........mostly nothing except "brain fog". My liver enzymes were elevated so I had a VL test that came back >5 million. My sides during treatment were horrible, which is why I'm trying to avoid it a second time. If I am lucky to get a fibroscan, and if it backs up my MRI results, and my Liver isn't damaged (like stage 1 or 2), I doubt I'll treat. One Doctor told me that unless my Albumin/Total protein drop, he did not think that fibrosis was a problem. He advises no treatment due to my age.

Steve

[jmjm530]

No website, but "HepatitisResearcher" posts here often by that name.

The easiest way to reach might be through another one of our members, with the screen name of "Forseegood". You can find her in this thread here:
http://www.medhelp.org/forums/hepatitis/wwwboard.html

Just click on her name, and send her a private message with your story and stats as you laid it out in the first post of this thread. Then tell her I suggested you contact her to try and arrange for a Fibroscan with "HR" (nickname for Hepatitis Researcher) if he is available. Hopefully, she will read her private messages within a few days. If not, you could post to him directly when he's around.

Good luck.

-- Jim

[SteveHepC]

I found Dr Afdhal and the Liver Center in Boston. Thanks!

[SteveHepC]

Thanks! Is there a web site? I am unable to locate it under HepatitisResearcher.

[hairtamer]

I was having major side effects before treatment.  I was dx in '99 and everything was ok on my blood and liver biopsy.  When they did this last biopsy she said I had 12 years until cirrhosis, I was already in depression, fatigued, suffering from vertigo, visual migraines and worst of all I was so foggy brained.  I am off on short term disability, for tendonitis in my rotator cuff, my physical medicine dr said do the treatment while you are off.  So I am the side effects are similar yet different.  Did you suffer any sides  before treatment?
God Bless,
Rose

[hairtamer]

  My viral load was 11,900,000  grade 2, stage 2,  in feb. 2007.  

[jmjm530]

If you're on the West Coast, you could post your story to "HepatitisResearcher". He posts here and has his own Fibroscan machine.

[jmjm530]

In your shoes, I'd also want to know how much liver damage I had before subjecting myself to those drugs. A Fibroscan might be perfect for you as it's a non-evasive procedure and correlates very well with liver biopsy. Don't know what part of the country you're in, but Dr. Afdhal in Boston (Beth Israel) runs the Fibroscan trials. Why don't you try and personally contact him with your story and see if he can help.

-- Jim

[SteveHepC]

Thanks for the info. I don't see how I could treat again and feel that terrible for 52 weeks. I was useless, fatigued, moody, nauseated, low blood counts, memory lapses and disorientation. There were times that I didn't know where I was or who I was.

They will have to prove to me that my Liver is in danger before I do that again.

[Myown]

I think I'll play the "wait & See" game, waiting for the Phase 3 trials from Vertex Pharacutical. Dr Cecil says they have seen cures in 28 days during the Phase 2 trials. If I did treat again, I'd use Pegasys, check blood after 4 weeks, and if I was responding, quit treatment after 12 weeks. The info I read indicates that it's not necessary to go longer for Genotype 2b if you are <615 after 4 weeks.
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Hi Steve,
I'm a geno 2b. I treated for 24 weeks was RVR (rapid viral responder) I was UND from week 4. And then 4 weeks post was still UND. Then around 7 weeks I relapsed. So as you can see being UND at 4 weeks isn't always 100% that a person will go on to SVR. I fell into the 10% category that relapses.
So now I will have to treat for 48 or 52 most likely. Definately at least 48, but I might just go the extra few weeks. I didn't have a bx until after I failed tx and its between  1-2.

I was on "weight based tx" riba and interferon. My doctor told me that the drug that Vertex is not for geno 2's because it only showed a 2 log drop. That is the reason I will be treating again with these meds that are available now.

You may want to discuss with your doctor about double dosing in the beginning. Some have done that and have gone on to SVR.

Wish you the best. keep us posted.

[SteveHepC]

What was your Viral Load count before you decided to treat? GOOD LUCK! How are you doing with the sides?

Steve

[hairtamer]

Thank you.  I am a 2b and going into my 5th week of tx.  I should be getting my result for the 4th week next week.  I am on Pegasys.
God Bless,
Rose

[desrt]

Good call.

[SteveHepC]

Since I haven't gotten any responses, I'll answer my own question. I think I'll play the "wait & See" game, waiting for the Phase 3 trials from Vertex Pharacutical. Dr Cecil says they have seen cures in 28 days during the Phase 2 trials. If I did treat again, I'd use Pegasys, check blood after 4 weeks, and if I was responding, quit treatment after 12 weeks. The info I read indicates that it's not necessary to go longer for Genotype 2b if you are <615 after 4 weeks.