Dosage reduction. Cr@p. Impact??

[Trish77]

Well, I finally pushed my luck.  I just got the call.  I've been so obsessed with the damn lymphocytes and whites and it's my reds that got me.  I'm down to 9.6 and they are forcing a ribavirin dosage reduction.  I have to go from 1200mg to 1000mg immediately and indefinitely.  Trial protocol.  Not procrit.  Ribavirin reduction.  My ANC is 1.8 and my lymphocytes are down to .4 .. so no INF reduction because my ANC rebounded enough to offset my lymphocytes.  

Indefinite riba reduction.  I'm very strong about my feelings on the importance of riba.

I don't go for my next blood test until July 4th and they are reducing it until I get the results of that test back  

Today is Week 17.   I was UND by Week 6.

Most of you know I'm on the R1626 trial.   My choice here is to go with the dosage reduction .. or ... not.  Which means dropping the trial.  

I would like to have your feedback on the potential impact of a dosage reduction at this point, for about the two weeks I'm facing right now and potentially longer.  I'm thinking...as long as I can get back to normal after July 4th, I'm good.   Longer than that .. I don't know.

I would appreciate any input, thanks.

The odd thing .. is that I feel pretty good. Not like I'm doing anything overly physical but I'm working fulltime and staying very busy. I'm starting to think I've turned into a tx automaton.  Just keeping on keeping on.

Trish

[Trish77]

Man...you guys can sure make a woman work.  I put a notepad by my computer and started going through each post and taking notes on the things I felt needed to be considered based on all your comments and got to work.

I'm good.  I have my ground.  I learned alot while researching this to be satisfied with my decision and I'll want to share what I learned later after I get a bit of downtime, hoping some of it will be useful.  I'm a bit of a ragdoll today and need some physical rest.  Too tired to type right now and will catch up later.  

Thanks from the bottom of my heart to every single one of you who commented and emailed and shared information and took the time to share your perspective.  I haven't talked to anyone in my life other than all of you about this.  This place is pure gold because of the people who are here.  Thanks for being there.

Trish

[Willy50]

I didn't mean to suggest that one could reduce by that much.  I wanted to suggest that 100% compliance may not always be possible and that essentially down to as low as 80/80 one might still be in the ballpark.  The general sense is that if that rule has some merit....... you still are NOWHERE near that reduction and therefore have some time to reflect on this dosage change.  Compute the number of riba you've taken and then compute the number of riba less that your new dosage reduction with account for.  The few pills less per week are a small portion of what you've taken; no where near any 80/80.  You have some time to think and decide.  I think it's possible that with the reduction you'll bounce back up and could continue merrily along the path.  It could be just a week or two.  Even if it isn't it appears that you may still be above the weight based dosage and therefore perhaps a mute point.

You can still ask to get your RIBA trough levels checked.  That is more important than how many pills you take.  IF your trough levels are up I wouldn't think there would be any issue in a temp reduction.  IF your levels are really high it truely might be a good idea to reduce.  IF they are low (which seems unlikely) a reduction might not be a good idea.  You can ask about this idea.  Maybe it has merit; maybe not.

I still think you may as well get iron checked just in case you are low....it could help and would need to be up if procrit came into the equation.  I understand that hemolytic anemia won't be cured by supplemental iron but why not address this IF it's a partial factor?

I'd repeat that I'd want to nail this down on this first treatment since a failure could also spell resistance issues for you in the future if you had to re-treat.  What will it take to ensure an SVR?  

Good luck kiddo,

willy

[frijole]

Great thread.  Very helpful.  

Trish, it appears from what everyone is saying that you may be alright right now with the RBC dose reduction. However, were it me, I would be really concerned about the possibility of the INF reduction at ANC < 1.5.  Reseach has shown that Hep C patients can withstand a much lower ANC without the possibility of infection. However, trial protocol is normally whatever the dose reduction recommendation is on the package.

"PEGASYS and COPEGUS should be used with caution in patients with baseline neutrophil counts <1500 cells/mm3, with baseline platelet counts <90,000 cells/mm3 or baseline hemoglobin <10 g/dL. PEGASYS therapy should be discontinued, at least temporarily, in patients who develop severe decreases in neutrophil and/or platelet counts (see DOSAGE AND ADMINISTRATION: Dose Modifications"

I think I would try to locate a doctor who would be willing to pick up your treatment with SOC and rescue drugs if needed.  Although you say you are fine with HGB <10, I have a hard time believing that it is good for your system..  Remember, your brain needs oxygen and the HGB is just the indicator of how much oxygen is flowing in that blood and to the brain.

The issues that you are dealing with hit home to me as I try to decide to treat in a trial situation.  I would want to do right by the researchers, but at the same time, I would have to consider myself primary.  For me, there will only be one more shot.  My stats are very similar to yours except for the duo genotypes (I am 1a).  Is there a worry about drug resistance with r1626?  That would be another issue to think about when considering whether to bail from the trial.
frijole

[Kristina538]

Thanks for the info on the Pepysis and Copegus.  Next week I'm taking my first shot and have been given 180mg INF (Peg) and 1000mg Copegus.  I'm only 56kg and thought they may be 'killing me softly' :-( .. Ha! I was ecstatic to read that the dosage is right.  I see my Specialist every second time throughout and my nurse really seems a bit dipsy. I thought I should've been on 800mg Ribavirin but feel safer now - they're probably trying to give me a hammering early on.  A naturopath has put me on high dose folic acid but says I must stop taking it as it interferes with interferon (I think it assist red blood cell formation).  Best of luck Trish;  I notice your biopsy results give you a bit of leeway but I'm impressed by your research - when I did it in 1994 I didn't take too much notice, but then, I felt very healthy and decided to 'give myself to science' once only (now it's twice :-)

[geterdone]

I was on pegasys 180 and 1200 riba up to week 20 then reduced the riba to 1000 due to sx's and stayed on that dosage up to week 44 then went back up to 1200 riba for the last 4 weeks of std. soc. My vl was 4.7m and my weight when starting tx was 210lbs and lost 30lbs in the first eight weeks but was UND by week 8 and the sx's started mounting an all out assault and by week 20 decided to reduce the riba. The saving grace was the procrit which had kept the hgb in the low 11's and I too worried about the riba reduction and what might happen at the end of tx but at that point and time I had some very knowledgeable coaches here that provided insightful experience that had eased my worries about the possibility of relapse. I had remained UND through the rest of tx and 2 pcr's, one <5 and the other 5 weeks later UND <2 since stopping std soc and then the taper and I'm going into 5 months post with the Big 6 month coming up. With you being at week 17 and UND to this point and if the 200mg reduction has that much of an effect on you then it was meant to be and there would have been nothing you could have done to change that. If you want to stay in the trial go along with the riba reduction and see what happens on the next blood work after the 4 of July. Best of luck to you in what ever you decide.

jasper

[TeeVee36]

I would not stop at this point, can you reduce awhile to get the red's up a bit and than ...shhhh.....take that extra pill anyway?

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A friend of mine from this forum (who rarely posts) was on a trial as well.  She too had to do a riba reduction due to a very low Hemoglobin count.  Her trial didn't allow for rescue drugs either.  She went against dx's suggestion and continued to take full dose ( I believe she was encouraged to do this on this forum) and the results were not good.  She "bottomed out" (her words) and had to do an even lower riba dose reduction.  Her Hemoglobin count was in the 8's.  She stayed in the 8's all the way to the finish line (even with the dose reduction).  She wasn't working and would pass out just sitting at the kitchen table.  I was very worried about her condition and mental state that developed (that is all I will say about that)...Not getting enough oxygen can be dangerous that is why it IS a concern.  

Sorry I don't know her post tx results yet and/or the impact of dose reduction.

Sounds like you are doing really well thus far except for your Hemo count.  

Good luck to you and whatever you choose (stay the course/stray the course/drop the course).

Just another bump in the road...this too shall pass...

Peace and Love,
TV