SkipinCA

[SkipinCA]

New here.  First time posting.  This site has been a very helpful place for me during my treatment.  Have found great insight and information, also comfort in knowing I’m not going through this alone.  Thanks all!

Am geno 2b doing 24 wks Peginterferon alfa-2a/Ribavirin, 60yrs old, at 6’3”, starting treatment at 238lbs, 2,368,000 Viral Load, UND at 4 weeks, TMA negative.  Have been doing max 1200mg riba/day, 180mcg interferon/wk since beginning tx.  Still UND at 9weeks.  Am now at 224lbs.  Only experiencing minor sx so far, mostly fatigue after exertion lately, eye sensitivity, ear plugging problems.  

Am starting week 10 and doc now advises it’s okay to lower riba to 1000/day.  With that small a reduction, can I expect any improvement in how fatigued I’ve been getting and if so how soon will I notice it?  Has anyone out there done this and noticed a difference?  My stats at beginning treatment 7/23: WBC 8.8; ANC 5.2; Platelets 282; Hgb 16.7; Hct 48.  Current stats (after fasting tests 9/25):  WBC 4.4; ANC 2.17; Platelets 225; Hgb 13.6; Hct 39.9.

Thanks for listening and any help about this.  I’m sure I’ll find out from the experience, but specifically need to know if I will notice a difference within the next two weeks.  I have been working 9-hour days through treatment and also am a singer in a chorus that rehearses 2 and 3 times a week.  In two weeks I have a seven-day stretch of evening singing rehearsals and concerts (with a choir) and the thought of those long days has me worn out.  As it is now, I’ve attended two 3-hour rehearsals and afterwards am wiped out and the whole next day my energy level is shot.  I was at a point where I was going to call it quits with singing until after treatment, but then the doc said I can reduce my dosage and it might give me more energy.  Now hoping I can continue, but just not sure one pill will change how I feel enough to make it worth it, especially within the next two weeks.  Thought I’d check to see what others have experienced with dosage reduction.  

Thanks again!

[Proactive]

Of course you are absolutley correct about SOC treatment...It is time SOC was updated..

"if you are going to tx you better find a doc that treats many hcv patients and is up to date with latest protocols"...I couldn't agree more!!!!

[copyman]

i did not say not using weight based riba was right. i know  the importance of it BUT most docs do not! most docs go by the book and that says 800 riba for G2's.  this is a fact and if you are going to tx you better find a doc that treats many hcv patients and is up to date with latest protocols. and as my previous post said i would not change a thing and would stay on the higher dose!

[SkipinCA]

pro, you're absolutely right about my hgb.  didn't think of that.  

Thanks everyone.  Am now able to skip these upcoming rehearsals/concerts with a clear mind to what is more important - my treatment and getting through the next 14 weeks!

skip
.  

[Proactive]

, Even though you're in great shape,you have had a 3.1 drop in hgb, so you should feel some fatigue.....that's to be expected......speaking of fatigue...I've posted over my limit (G)....good luck.Pro

[SkipinCA]

I sure am in the dark about a lot of this.  Am learning every day.  Thanks for your knowledge and help!  I have terrible recall (must be age-related :)) but I spoke with my doc shortly ago and was told something to the effect that because my results have been so good so early (at 4 weeks UND - HCV RNA <615; TMA negative-which I guess means <50) and remains the same at 9 weeks, and I've been on 1200mg for the whole time), reducing the riba to 1000 is minimal and will not change the final outcome...  I was also told that there is another kind of fatigue during treatment (usually occuring around weeks 12-18) associated with the interferon that is not measured by blood test results.  It has to do with its effect on "cytokines" or something).  That was news to me.  Is this other kind of fatigue something that anyone can speak to?  I never think of the questions to ask in the moment...  Now I'm thinking that if my hgb is normal perhaps my fatigue is more interferon- related than riba-related.  

[Proactive]

I kind of equate not using weight based riba to treat all geno's, similar to  using a <615 iu/ml pcr....ie.
old technology...jmho Pro

[Proactive]

No,No,No, I aint no pro....I'm at 21.3 mg/kg/day and hgb has gone from 17.8 to 11.2....not sure if anyone should put any faith in my opinion or not !!! (LOL)

[copyman]

for geno 2's they do not use weight based dosage like they do with 1's. so 1200 is more then enough. but even considering this and with the good bloodwork i would not take the chance of changing anything. best of luck

[debnevada]

Ala:  Yep, it is!!! I ain't bitchin'....well, too much

Pro: I didn't mean "overdose" in the classic sense, and as ALA notes, it IS working......i am thinking it's a moot point to even care (other than weird sides) because it IS working and I might get out of this nightmare in nine more weeks (week 36). Still dunno yet. I've been UND for 25 weeks and teh last TMA was NOT DETECTED as opposed to <5.

at this point it is an intellectual exercise for me.

Skip, Pro is,   um.....a pro at this. See if the doc will let you ride it out.

[Proactive]

Deb, what I read somewhere was 10.6 mg/kg/day was the minimum to be considered weight based ...Never have read about what would be considered overdose levels, although I would think that Swedish study was in the upper limits of tolerance (G)

Skip, with an hgb level of 13.6 and starting at 16.7, it doesn't appear you are anywhere near the need for procrit or another epo....good luck..if it were me, I'd continue to ride out the journey at current dosages....sounds like you are doing great!

[SkipinCA]

Thanks for the study.  I've been told I've been given max dosage for my genotype/weight from the beginning with the idea the dose could be reduced instead of putting me on other injectables like procrit or neupogen.  Now it appears I'm not having any problems except fatigue and I'm wondering if the dose reduction is more to satisfy my desire to be able to accomplish certain short-term personal goals (to be able to sing these concerts in a couple of weeks).  I've been assured that the lower dose is ok, but I hate to lower dose if it is better not to. Will rethink my priorities and check back with my doc.

[alagirl]

Deb - it's working though...

[debnevada]

then i think i might have been overdosing all this time, per my doc's instructions

[Proactive]

Sorry for my fragmented thoughts here (I'm on 1600mg riba)...I stand corrected, it would appear that @224#'s, 1200mg per day of riba would be considered weight based, ....anything 10.6 mg/kg or greater is weight based from what I've read..

[Proactive]

Here is a study you might find interesting...
http://www.nyp.org/news/hospital/910.html

[Proactive]

With hgb at 13.6, why is your doc lowering your riba? At 224#'s, weight based has got to be way above 1200 mg/day of riba..