update on 12 week post treatment

Hi All

Just a little positive update to keep you all going. I

[mikesimon]

Just a suggestion: Try continuing your original thread next time rather than posting a new question to continue. Post your question and then respond to it with the continuation. It makes it much easier to follow. Thanks for the information. Mike

[iceboy]

I think you posted your suggestion on the wrong thread. Point taken though.

xx

[HCA]

I was very interested in your post because your case has much in common with mine.
I am geno 1a/1b too!
I have serious anemia problems.
My hgb was 8.0 this week in spite of reducing riba to 600mg and being on large doses of either Procrit (epo) or Aranesp.
Next week I am having an infusion of iron.
I am having to stop riba for a few days,and then gradually reintroduce.
I started with VL 805,000 and was clear at week seven.
Monday will be the start of week fifteen for.
This is not my first treatment.
Please tell me about your anemia issues,riba dosing history and anything else you feel is relevant.
Well done so far!!!!!!!!
Very encouraging!

[friole]

Your news is remarkable and wonderful. You said you were detectable at week 24???? and now post tx are not.  I can not be happier and I certainly hope this is the end of the road for you (or, should I say, the beginning of a new one).
frijole

[goldyn]

Ice I love to hear your post tx news i felt sooo sorry for you when your hemo went sooooo low, im glad to hear you rebounded fine and are doing well, st ill undetected and sx free.....


HCA im sorry to hear your hemo is low , how are doing with it so low ? I dont know your stats but do they have you on procrit and if you are or have been did you experience any sides from it?

[HCA]

Yes,as stated above I have been given strong doses of Procrit.
I have not noticed any side effects directly caused by this particular drug,but my physical and mental wellbeing are,at this point very low.
I have previously had three treatments of approx. 24 weeks each and one of 48 weeks,all of which I tolerated averagely well.
The current treatment is however proving too difficult for me,and I doubt my ability to see it through.

[iceboy]

Hi HCA

sorry to hear you are suffering from the anaemia. I was between 6 and 8 the whole time, even though I was on full dosis of Aransep. After 12 weeks the doc pulled me of the riba for a month but my hgb did not go up so he put me on 1/2 peg for 3 weeks and I got back up to 8,5 and started then on 600 mg riba and full dosis peg. Couple of months later I was back down to 6 and then it was a on/off situation but never more than 400mg. I think I made it difficult for myself because I did not want transfusion. It

[jmjm530]

That makes sense now. It seems you're very sensitive to the treatment drugs which is one reason you SVR'd in spite of your spike at week 24. As soon as you went back on the peg and riba it apparently knocked the virus back down and at this point it appears to be for good.

Skin is better but still some issue, especially with the sun. Not much sun right now but this summer will tell more. I'm not too optimistic that I will be able to be too active sportswise outdoors in the sun, but we'll see.

The Lagoon still sounds like a good idea. You will be the first to know if I decide to give a try. Could you post a link to it again?

All the best,

-- Jim

[jmjm530]

Congratulations ! Maybe it was that spa you told me about that made the
difference :) Am I reading it correctly, that you were non-detectible at weeks
4, 12, 30, 48 and 10 week post but were detectible (30 IU/ml) at week 24. This is very strange unless the week 30 test was a false positive, but I guess no reason to look a gift horse in the mouth. To answer your question, the difference in SVR percentage between the 12 and 24 week post treatment tests is around 1-2%, so you'd have to be very unlucky fellow to relapse at this point but we all know you've a very luck fellow, so not to worry.

All the best,

-- Jim

[iceboy]

Hi Jim

Yes I was detectable at week 24. this is how it reads.
VL Start of treatment:
1200000 IU/ml
week 4
4000 IU/ml
week 12
NOT detectable (qualitative test)
week 24
Detectable (qualitative test)
week 30
NOT detectable (qualitative test)
week 48
NOT detectable (qualitative test)
week 10 post treatment
NOT detectable (qualitative test)

How are you any way old bean. How is life treating you. Are you back on track enjoying svr..

xx
ice

[jmjm530]

Not that there's always a rhyme or reason for things, but -- assuming all your qualitative tests were both sensitive and had the same sensitivity -- did you reduce meds between week 12 and 24 and then maybe boost the meds back up between week 24 and week 30? That might explain what otherwise looks a little askew.

----------
Yes, doing OK. Last viral load test was negative nine months post treatment. I'll be taking my one year post test in a month or so.

This is really great news for you as I know you were worried.

-- Jim

[iceboy]

Yes, in that period between 12 and 24 I was totally off riba for 7 weeks and only on 1/2 dosis pegasys for 3 weeks. All the qualitative test should have had the same sensitivity. Im just so greatful I didnt stop the treatment, just always get on with it day by day. And you know what - it

[HCA]

Thanks for the info-most interesting.
They haven't offered me a blood transfusion-they don't consider it appropriate.I am happy with the standard of care I am getting.
I tested at four weeks-450,then six weeks-29 which means an unquantifiable number between 10 and 29,so it's fairly certain that had I tested at week seven it would have been UND.
I tested at week eleven and that was indeed UND.
I am familiar with the 24 week treatment regime for geno 1 RVR's,but I didn't quite get into that bracket.
I agree with you about one day at a time,there's always the hope that tomorrow will be better!

[goldyn]

Were your treatments back to back? 48 weeks was all i could do, I blame the procrit on my Blood Pressure going up the last 3 months of tx and iwas also getting heart palpitations, it could have been the procrit or it could have been i was just worn out, is it the hemo thats wearing you down or is the tx just wearing  you out? I tell you I was really worried  about my well being towards the last 2 months of tx...Can you get a blood transfusion if needed? I bet that would help... I will pray that you start feeling better soon.....
                       goldyn

[beamishboy]

Wow!! great Good News,,,elated to hear of your sucessful trx..i know your toxic journey was one rough ride thru out..truely a testiment to hangin tuff ...CONGRATULATIONS !!!!!!!!!!