Lowering doses, labs

[Lady Lauri]

  Hi All.
To brief:  Pegasy/Riba doses just lowered from:
Peg: 180mg to 135mg.
Riba: 800mg to 600mg
In 'only' week 6

In a trial, no rescue drugs. Higer doses had me 100% bedridden (?)
After reviewing all labs, sides, type2b, etc. Dr. decided to lower.

Shands app. yesterday. I am UND, RVR at 4 weeks. Not 'allowed' to tell me but 'overheard' I was at 2 weeks (?) and getting the best response, etc. New plan in tx is........

Doing this dose a couple more weeks, watching labs. Than probably lower to 90mg Peg.
His goal....to keep some of these drugs in me, stave off anemia (getting taken off tx) for at least 10 more weeks, reaching 16.
I am very comfortable with Shands and my Dr. and he is quite secure in just getting me to 16 weeks and I will reach SVR. Said my labs 'holding up okay'. Of course if doing well, I will do more weeks.
I don't know the 'labs' too well yet. learning. Posting what I think is needed for an opinion.
Whatever is dropping......can it stabilize out, get better with just lowering dose's?

    RBC. Start 4.46... wk4     3.50
    Hgb: " "      13.9   wk4     11.3
    HCT " "       42.3   " "       33.0
    PLT " "        204    " "      197
    WBC " "      6.1     " "      4.0
    Neuts  " "    4.2     " "      2.3
    AST  " "      46      " "       28
    ALT  " "       59      " "      19
    Alb   " "       4.3     " "       4.1
    T Bili " "      0.4      " "      0.6

  (What are neuts??)

VL load at start of tx was 1,550,000

  I don't know these to well, but don't see anything that would make me 'drop to my knee's', as happened 2 weeks ago.??

  Any opinions helpful, thanks.

                                                                                   LL

[Lady Lauri]

Hey guys, haven't been online much, a lot of company past week.

  Now you have me thinking, tho I do think it boil's down to early responder, RVR at 4 week (tho lowered before that came in? So maybe week 2?) , I weigh only @ 125 and type 2b. Plus the case of no rescue drugs.
  Between the conversation of him, trial study nurse and myself, I got that he'd rather lower now, as I was doing pretty bad in week 4 -early- tho labs didn’t show much- rather than risk anemia, being taken out of trial per the 'rules', etc. QoL forms , depression forms,  all filled out every app. So other reasons why they could ‘drop’ me.  This is Shands University in Gainesville , Fl. and my Dr. is 'head of trial' (somewhere in that) , has been on the press releases, etc. in studies and am quite secure in him. Plus him and others 'confer' every week on each case, so their is many involved in each individual case. As he put it when I came in just in time for the trial and qualified, "you'll get better , more individual care in the study than even here" (at liver center.)  Never a wait time at any app.'s. e-mail him or my trial nurse, I have their cell phone #'s (which I don't abuse) and I get a reply right away any time I call, e-mail.
So I feel the '2nd opinions' are there at every weekly meeting. There is also 2 other Dr.'s in the study office and have seen another when there also. These are all liver specialist.
My personal, no med school opinion is, I am small and my body was not handling this stuff well at all, ( few do!) even with labs in okay range and that he is more concerned to keep me in this trial (cost/care/finish tx), than have anemia, problems set in of which HGS 'rules' would take me out. His main concern seems to be keeping me on these drugs to at least 16 weeks, with no 'break' in dosing (daily)....as per if trial took me out, starting over at liver center, giving virus any chance to break thru.
ALSO, he even said we could take my Peg. down to 90mg. if I was not out of bed in next few weeks.
Note: Don't want to lower anymore and will try to do more than 16 weeks, labs providing!
  
Question : At 2 weeks my Hgb was 13.7, than 11.3 at 4 weeks, with that being over 2 'point' (wording?) drop in 2 weeks, couldn't they feel that I could drop 2 more in 2 more weeks......being below 10? Than.....'out of trial'?

Also: while I was ready for some 'bedridden' and had even set myself up, new laptop, ready to be sick, arranged my life, planned for in case.......when I said to him, " I've accepted the fact my next few mths. this is how it may be, I'm ready to 'live' in bed"...he said "Nope, doesn't need to be that way here and 10-14 days straight, no up days, is not good".

Value all your opinions and thanks for them.
                                                                                               LL

[zazza]

I don't understand about the lowering of riba either. I have not read all of LL's prior threads, so perhaps there are factors I don't know about. Maybe you are very skinny? If you take the number of milligrams of riba you take and divide it by your weight in kilos, what is your "mg riba/kg"?

Rescue drugs are not allowed in my country. However, there is no talk of lowering riba as long as your hemoglobin does not go below 10.

[CockSparrow]

Jim - but not sure why the Peg was lowered
-------------------------------------------------------------
I had the same thought even when I wrote the post above.
LLs bloods look bloody good to me.
CS

[jmjm530]

Lowering riba to "Stave off anemia" is a reasonable call if rescue drugs aren't allowed, but not sure why the Peg was lowered with what appears to be very high neuts.

-- Jim

[jmjm530]

Labs look fine, did your doctor tell you why the doses were lowered? "Bedridden" is a pretty general term, and while the majority of us get out of bed, go to work, etc on treatment -- some of us are more or less bed (or at least couch ridden) for much of treatment.  I fell into this category with no dose reduction. I'm guessing because of your genotype and RVR, your doc figured a dose reduction is in order. Personally, if I thought I could hack it, I'd get a second opinion on lowering the dose -- especially the Peg -- but don't know how that flies in a trial situation.

All the best,

-- Jim

[Lady Lauri]

   Halloweens over ! (they had drinks, I took a pill!,LOL) Our 'annual party' last night, along with Wed., pulled it off but see 'bedridden' again next few days! :}

CS.....my little encyclopedia :} thanks, from what I compared to, list of the norms., I thought it was holding pretty good.
(I had 'eclampsia' in a preg., totally bedridden, sick than)Thanks for how you post studies/facts.  I realize I could look up a lot of this, but I am also the one that pulls up 20,000 sites and spends hours looking, while you sum it up so easily :} Appreciate it! Much.

Merrybe....are you saying you went 'back' to acute ? Huh? (did you mean acute TO chronic?)
No ,rescue drugs means  doesn't mean I can't have pain meds, or sleep aids. (thank God!), just nothing for anemia, serious ones that would make them stop tx, so when it hit me so hard, got extra worried. I did read your post, need to read thru again, further, but sounds interesting -done right! I agree sleep is a major thing, even in healthy people! Getting into 3rd, 4th stage sleep not so easy on this Riba, aye?? Hope YOUR feeling better.

Zazza.....yes, I bawled when I was told type 2. My Dr. is very reputable, exp. in Hep. and even in this trial, curing me seems to be his # 1 priority, not the trial. As 2b, he feel's these dose's will do the job and will lower even more to keep me on them longer. I do think that even the small drops in labs and the drugs, just floored me, as it does many of us. I am up and around (A little!) since the reducing meds, and/or my body has adapted better. At start my Hgb was 13.9.at 2 weeks was 13.7, than from 2-4 weeks went to 11.3, so assuming that made the huge difference in slamming me??
  Type 1 I would be far more leery of reducing, and doubt he'd have done it. Where are you at in this?

desrt.....I agree, quit punching the liver!! :}
I have not had any pain in the liver, inless it could be in the back?
Bruising not explained. No more have popped up and assuming it could be from acupuncture I also do, Hemo- somethin's?? Sure wasn't from ANY activity, as done NONE!, LOL

kcrandy,.............. i am sure i speak for all of us ; we are pulling for you..............
thank you, as I am rooting for ALL, also. I did get the 'highs and lows' now to compare, watch.
I so suck at researching on the comp. tho. Do okay but end up pulling up so much more than I am looking for , than reading all kinds of stuff I don't need, than getting what I am looking for and so on. Some days.....not into deciphering 200,000 websites pulled up , specially when 'Grasshoppers' brain is feeling like a size 13 shoe stepped on it :} LOL.

  Thanks all..........................LL