Genotype1a 48 wk tx stopping 2 wks early?

Hi Everyone,
Well my hubby is almost done with his tx. He has been on Neupogen and Procrit since pretty early in tx, had one blood tranfusion, and has been unable to work. He's pretty much been bedridden for 46 weeks :( . I haven't had much time to check in here cuz I've been busy working, trying to keep a roof over our heads through all this. The good news is that Rick (hubby) cleared at 8 weeks (well, maybe sooner- he had a drop from 2 million starting tx to 1200 on his 4 wk PCR).
  Now he is just done with feeling like this. His RBC is dropping again and he's feeling weak and tired and can't do anything without stopping to catch his breathe. So he wants to stop tx with 2 shots of Interferon left- and approx. 21 days of riba left, if he continues taking it til the end of the last shot week.
  I'm saying no, don't stop- cuz he has a lot of liver damage and he says he will NOT treat again, so the stakes are high. I told him if he MUST do something, he should cut his Riba from 5 pills daily to 3 or 4, but not stop completely. I just don't want him to relapse because of two lousy weeks! But if his odds are pretty much unaffected by stopping two weeks, I think he deserves a break.
  What do you all think? Anyone know the odds of SVR decreasing for a genotype 1a , male 54 yrs old with diabetes and probable cirrhosis, who stops tx two weeks early?
  Thanks to everyone, as always, for being here and for being so helpful and wonderful. I think I would've lost it without this forum!

[jdwithhcv]

That is such a tough decision.  I can understand why Rick wants to be done.  Forty-six weeks in I wanted so badly to stop.  It seems like you've been doing this forever, and what's the difference with two weeks one way or the other.  Every day is such a  struggle when you have sides like his - I went the procrit/transfusion route too and could not work either.  By week 46 I just did not want to go through it any more!

I cleared at week 4, and by week 44 I started thinking about stopping.  But Rick didn't RVR, so that has to be a consideration. His diabetes and possible chirrosis (cirrhosis), together with his determination that he would not treat again in case of relapse, all argue against stopping early.  In the end I decided that I would not risk it all, because if I relapsed later it I would always have to wonder if I could have gotten SVR if I had just hung on for a few more weeks.  

I compromised a little bit - I did not complete the last week of riba.  I stopped that three days early, with my doctor's permission.

Whatever he decides, I hope Rick will get his SVR and recover from the rigors of treatment soon.  And whatever happens, I think you should be commended for helping him through this so gracefully.

jd

[Marcia2202]

Personally I like your idea of reducing the riba. I would not risk topping to shots early. I think at this time of treatment a reduction of the riba would not be a problem.

Wishing you all the best!!!

Marcia

[copyman]

I would taper off the drugs over the next 2 weeks. He should feel better just by doing first shot 3/4 then 1/2  shot and maybe even one extra week with a 1/4 shot.. Then dropping the riba by 2 per day for 4 days then one less every 3 or 4 days, etc. The concept of tapering the drugs is to gradually let your immune system takeover and start doing its job. It really don't matter with the riba because that is built up in a persons system. But doing less interferon should be felt immediately.

I personally tapered off the drugs with good results.

Best of luck

[Trinity4]

As jd said, he had some negatives going into tx with advanced liver disease, diabetes, over 50 and probably had the virus for a long time.  These things factor into the SVR equation.  Even though he did respond well to the interferon it doesn't mean once he stops the the virus won't come back but at least if he finishes treatment he'll know he did everything possible to beat it.

I have advanced liver disease, over fifty, had the virus probably 38 years and was a slow responder.  Worked full time, did Neupogen for the better part of 72 weeks of treatment and relapsed.  At least I have the satisfaction of knowing I not only did it right but I did everything humanly possible to cure myself.  It never occurred to me to stop early even though I was so sick and fatigue ridden towards the end. Unfortunately it wasn't meant to be this time but I'm not defeated and will treat again when the new drugs come out.

Two more weeks of misery in his life is nothing if it means a lifetime of good health without the thoughts of liver failure looming over his head.

My best to you both,
Trinity

[hughmcrae]

I am studying nursing and learnt that after one blood transfussion - in Australia, they rush to give you EPO "Erythropoeitin to boost red blood cells.

Also - why doctors don't also prescribe SQUALENE (shark liver oil) - that they put in our flu shots, without our knowledge to boost the immune system. Or at least suggest it, as well as high doses of Milk thistle (for liver regeneration - and cleansing). Which are both proven!!! In the medical fraturnity gets my goat!

---It like OK "We are going to give you lives horrible stuff, that will damage your health at the safe time as try to allow your immune system to kill this virus. But we are not going to advice you on any proven health products or chemical suppliments such as EPO when things go wrong. Like Low RBC - "EPO", Low immunity "SQUALENE". Both used for treatment for both.....

I suggest - go it any which way you can, and keep an eye on your FBC's!!!

[jdwithhcv]

Procrit is a brand name for the generic Epogen.  He is getting Epo.  

[dlr2007]

Jdwithhcv,
Thank you for your kind words.  I read your reply aloud to Rick and he seemed comforted to know that someone else knows exactly how he felt. His refusal to go on this forum himself has left him feeling alone in this. I'm so grateful I don't feel alone, thanks to everyone here! I'm glad that you got your SVR- sounds like you fought hard for it. Congrats! And I agree, the thought of relapsing in the future would probably be enough to keep me on tx til the bitter end. We'll find out next year when I treat... and thank you also for the generic name for Procrit. I like to kno the names of all the stuff Rick is on.

Marcia,
Yeah, I think that reducing the Riba is better than giving up altogether. I personally want him to stay on the full dose, but I'm not the one suffering. I don't know if Rick will feel any better from reducing it, but it might help his mental state a bit just to do something to cut back. Thanks for your advice and well wishes!

Hi Copyman,
Good to "see" you again! The taper idea sounds good- it makes sense to let the immune system start working gradually again. Strangely enough, Rick says he doesn't mind his interferon shots- he's just afraid the Riba will land him in the hospital for another transfusion. Thank you, as always, for your great advice. I feel that you played a part in Rick's clearing this virus, cuz you told me about Dr Afdhal-  I'll always be grateful to you for that :) .

Trinity,
Sounds like your situation is very similar to Rick's in terms of age and liver damage. I'm so sorry you went through all that and then relapsed- that truly *****. I completely understand how you would have always wondered, if you stopped tx early, if that was the reason. At least you gave it your best, and your liver got a nice long break. Good thing we finally have the new tx coming next year- I was also a slow responder on the old 3Xweekly interferon and I'm going for the new stuff too. Here's to both of us clearing this time (raises glass of nonalcoholic beverage)! Thank you for sharing your experience with us.

[copyman]

if it is the riba causing the problem then I would stop with just 2 weeks to go. the riba is so built up in the system it really will not matter.