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]

Why thank you!

  tho I don't need a left ball right now, maybe later tho !

                                                                                          LL

[CockSparrow]

And am i glad its you rather than me. LOL
You want to watch it though.
CS

[alagirl]

Hell, my hgb hasn't been ABOVE 10 since the first week I started tx.  I haven't hit ten again.

[froggydan]

Really, your labs look fine in terms of your red blood
cell counts.  Pretty much I'd give my right arm to have them in fact, LOL


I'd give my left ball, !

[CockSparrow]

Q. what exact tx did you do?  A. Same as you.
Even though it didnt work  I came out the other side a different person.
I am a lot calmer and relaxed than B4 Tx.
I am a G3 not a G2. Not quite as easy to treat, but thats mainly when non RVR.
G3 RVR are real easy to Tx maybe even easier than a G2. Non RVR is a different story.

The following comes from Table 10 in the Pegasys Product info sheet.
Hemoglobin in patients with no cardiac disease
Reduce only COPEGUS Dose to 600 mg/day if: Hgb <10g/dL
Discontinue COPEGUS if Hgb <8.5

Also from the Pegsys Info sheet
In the hepatitis C studies, the hemoglobin concentration decrease below 12g/dl in 17% (median Hgb reduction of 2.2 g/dL) of Monotherapy and 52% (median Hgb reduction of 3.7 g/dL) of Combination therapy patients. Severe anemia (Hgb <10 g/dL was encountered in 13% of all patients receiving combination therapy and in 2% of CHC patients receiving Pegasys monotherapy.

The above may explain why your doc lowered both drugs.
CS

[alagirl]

Really, your labs look fine in terms of your red blood cell counts.  Pretty much I'd give my right arm to have them in fact, LOL

[Lady Lauri]

Merrybe.......Glad CS set that straight, I thought you had them backwards as acute is earlier, chronic when symptoms hit, etc.
WHAT are the white lumps on the brain??? I so understand the Dr.'s that just don't HEAR you. I saw so many and as I 'look' so healthy.....kept sending me home with 'Oh your depressed" and other cr*p! (NOT...have a good life!) and than finally started doing testing, but never caught high ALT's, AST's for YEARS! (have labs from 1998, high!). They even, in 2003, did check for Hep. but ONLY A & B !! Figure that one out! As for "oh, she's been on the internet", H*LL yes we were, trying to self diagnose ourselves! I was so d*m sick of aching, hurting, being soooo tired and starting to think " GOD, IS this really all in my head"?? Even finally getting dx with Hep ended up being a relief, to KNOW what is wrong!  Just blows my mind that so many of us can carry 20-30 years and it's never caught?? H*ll, they have vaccines now, why is is not in 'normal' blood work checks??
What is with the spinal cord deal and what of the things you have going on, are from Hep?
I hope you are getting all these things dealt with, checked, followed up.

                                                                                                LL

[Lady Lauri]

Zazza......it would say more if the concentration of riba in the serum was measured, not just dose by weight. ------------------

So ask them if they do that? Do they ? would think they do.

Thanks for posting your labs. Think my 2.6 drop in hgb within 2 weeks is what put me to the floor? Week 1 thru week 2 yours dropped 3, did that hit you hard? Have you had to do any rescue drugs or has your hgb kept itself at those levels?
  I also think (read here) the body has to adapt. Bless you in week 52 of 72! You sound very together for 52 weeks!!
                                                                      LL

[Lady Lauri]

    
Awake, but alert ??? :}

CS.....curious, what exact tx did you do? That just so sucks you didn't SVR :{, what a blow with type 2. I may have read it already (duh days)....but are you going to tx again? Another duh...but thanks, remembered the 'log drop' is VL drop.

The name....... cute, for awhile I thought it was a 'guy' thing :}
--------------------------
"Roche recommend dropping a pill when it gets below 10 and keep dropping one till it hits 8.5.
Then you stop. At 8.5 you wouldn’t be doing a lot of running - lol "
-------------------------
I could be wrong, I thought when it hit 10 or below they could drop me from trial. I will check that again. What is considered dangerous level? So stop tx if it hit's 8.5?
And I ain't even walking fast at 11.3 !
Thanks for clearing up the acute/chronic thing......thought it was my brain fog or she had it backwards.

                                                                                    LL

[CockSparrow]

I weighed 76 kgs or so when I was on tx. So my Riba Dose was roughly the same as yours is on 600mg. Bad example though not only didnt I RVR, I didnt even EVR, and I wont talk about SVR.
For me I underdosed. Your situation is different being RVR.

The important thing for you is to complete the Tx, the quantity is less important. The drop in drugs should bring you back into the land of the living and then you and/or Doc can decide whether to increase the dose of one or other drug. What zazza says about the Riba dose holds true for us G2s and 3s but mainly when were do not RVR.

By 2 points I ment 2gram/dL. As for logs you dont have any to drop. You are log 0 ie UND.

The name comes from an 80s UK Punk band but I miss splelt it, shoulda been CockSparrer. Dont put a space in and it wont blank it out. It thinks you are swearing.

Merrybe
Acute means any disease that lasts for less than 6 months. Chronic is longer than 6 mths.
As this Acute phase is when symptoms occur ie with HepB it can also be more severe than when a disease becomes chronic. With HepC your ALTs can be up to 20xULN in the acute phase.
Its late so I hope that makes sence
CS

[merryBe]

OK, but it was only little punches and it felt good!!!  more like pokes.....: ))))))
anyway, it broke the pain signal for a few seconds and every second counted...

LAuri,
don't know that I wasn't chronic for years, because I kept telling my GP something was wrong with my spleen and liver/gall bladder/ and brain and spine...and she kept saying it was all hooey. turns out I was right on all counts, Brain white lumps, pituitary shut down, spleen anlarged and liver inflammed with Hep C and spinal cord bent with several ruptures....all the things I told her were wrong for years...while she told me I was clueless, and refused to test for any of it.

so I count the chronic going to acute stage when it got so inflammed I ended up in emergency doubled up in pain....with fever chills and unable to get out of bed or stop shivering for weeks...

maybe that's not what acute means...I don't know for sure...it sure seemed acute to me. then to hear I was already at stage 3/4 when they FINally figured it out.....kinda confirmed that I should have never taken initial baby caca tests as accurate. or definitive, never let a year go by when she said, oh you wouldn't have that it's extrememly rare........I should have fought a lot harder....but I did fight harder than most..the sicker I got the more I fought.....or else I'd still not have found out about the brain or spleen or liver or back.
The docs are all reluctant to do any testing unless you can prove in spades it might be whats wrong.
they would just as soon send you home with pills and say you have chronic fatique or whatever as to run the simple blood tests to rule out infectious disease.
So I went into trials for more testing...and I went to another doc in the same supposedly great practice...and got told the same thing...well we never test for that, it's rare.....grrrrrrr.

in my charts they keep writing something they don't like about me....always making notes.about it...
"she's been reading on the internet"        oooouuuu  me bad....yeah and if I hadn't, I'd be dead already.

[Lady Lauri]

I hate answering on these can't sleep, late, brain fog nights!

  Just saw your post of your hgb levels zazza, than saw my questions worded all wrong so going to re-read and post in the AM AFTER sleep, so I won't get annoying!
Please watch for it as my last post was a bit 'lost' and ...........thank you.

                                                                                                   LL

[zazza]

Hemoglobin is measured in gram per deciliter (g/dl). Normal values for women are 12.1 to 15.1 g/dl.

For geno 1 a desirable weight dosing of ribavirin is often stated as 13-15 mg/kg. For geno 2 and 3 a fixed dose has in the past been the most common: 800 mg/day for everybody. Today weight based dosing is often recommended even for these genos. I have seen the figure > or = 12 mg/kg mentioned for geno 2 and 3. Ribavirin's most important chore is to prevent relapse.

[Lady Lauri]

( I gotta know where the name came from? If I put it IN the post...it blanks out C*CK! :}

  

" I wouldn’t mind betting that LLs serum concentration of Riba would be quite high".
---------------------------------------------------
Which would explain why I am feeling better with the 200mg less in Riba ?
Which I had done myself  (I know.... I shouldn't have & didn't tell them......4 days before they said to! ) Than they also lowered Peg. to my surprise. But I had researched on all the weight based info. and had figured it was that kicking my butt more than the Peg.
Thus far, these dose's are much more doable.
-----------------------------------------------
"Which is what my “mg riba/kg” was."
-----------------------------------------------------
10.5 ? Your weight range is? and is that 'correct' level to have?
---------------------------------------------------------
2 'point' (wording?) .......................supposed to be 'log' drop, right?

   Thanks, learning as I go.
                                                                                                             LL

[zazza]

Thought I'd share my hgb levels with you so you can compare:

baseline: 15.2
week 1:   14.1
week 2:   11.1
week 4:   10.9
week 9:   10.5
week 12: 11.5
week 15: 10.1
week 20: 11.1
week 24: 10.7

From week 2 my hgb has stayed between 10 and 11.5, with one dip in week 42 to 9.5 when my interferon dose was increased because of weight gain. I am now in week 52 of 72.

My dose of riba was at start of tx 14.9 mg/kg. Now it is 13.3 mg/kg. I take 1000 mg per day.

It seems like you got a good team of docs looking at your case. And what CS says is important, it would say more if the concentration of riba in the serum was measured, not just dose by weight.

[CockSparrow]

LL - 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'
----------------------------------------------------
Its a little surprising if you were kicked out of the trial if you hgb dropped below 10. Roche recommend dropping a pill when it gets below 10 and keep dropping one till it hits 8.5.
Then you stop. At 8.5 you wouldnt be doing a lot of running - lol
So not sure why they would use a different protocol.
CS

[CockSparrow]

Zazza
LLs wiight is 57 kgs (apx) and the “mg riba/kg” is 14 with 800mg and 10.5 with 600. Which is what my “mg riba/kg” was. I wouldn’t mind betting that LLs serum concentration of Riba would be quite high. Its almost a pity we are not dosed this way.
LL
I would have trouble with 10-14 days in bed so don’t feel too bad about it. Its just interesting that your Docs dropped the Peg dose as well.

CS

[Lady Lauri]

  Guys AND 'Gal"....sorry Zazza :}

  Sorry that post was so long, I do babble!
                                                                      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