should i reduce my dose

[working dog]

i'm really not feeling right....i think my anemia is going way down...sometimes i feel scared to close my eyes...feels like i might not wake up...i'm in bed now i would say 18 to 20 hours a day....i'm on 1200 riba...can i cut down to 1000?...btw i live in the sticks 1 hour to a small hospital and 2.5 hours to a big hospital....my daughter is calling up my doctor too see what they say....so can i reduce the dose????????????????   billy

[fretboard]

.like i said i reduced the riba for now to 800.....thanks everyone.....billy
______________________________________________________________________
Glad you dropped your Riba, hope you feel better soon.  Unfortunately some ppl can't take Procrit and can't do a transfusion either so the only and best option some of us will have is to drop the Riba.  
Everyone metabolizes those drugs differently and so the residual effect for one person is never the same for another.  That said, I hope you are UND.  good luck!!

[Junebug812]

I don't really have advice or suggestions, I just wanted to express my concern regarding how you are feeling. When my hgb dropped (not as quickly as yours) I felt absolutely terrible and at times I too felt something horrible was going to happen. At times I had such a hard time breathing that I thought I might not be able to catch my breath. At other times I was fearful of being stranded as it was hard to walk and I had to take many breaks, sometimes sitting on the sidewalk if nothing else was available. When I was in not-so-great neighborhoods because of my job, I felt very vulnerable when I became weak in public.

I wish you the best and I really wish you canget some Procrit if the docs ok it. It helped me immensely and I was able to stay on the same dosage of Riba. BTW, I finished tx May 19th and I feel great and back to normal. Please keep in mind that this is all temporary.

Best,
June

[working dog]

again this is the #s  .....i did not take a blood test to start tx..it was end of the first week i was 12.7....then 6 days later 9.9......then 3 days later 9.1...now it's the end of week 3...tomorrow i take a blood test...tonight i do shot #4....i feel pretty bad...i would think it dropped more but we will see...i did a stress test before tx and was in good shape that way...i can feel that any kind of exercise right now could cause heart problems so taking it very easy....i'm very lucky to have a girlfriend helping me 24/7...i don't think i could do this alone....2 of my daughters are nurses and one is a nurse practitioner so helps although they live far away....this forum is great to have for help too...just did bp....111/72....pulse 51....not bad....like i said i reduced the riba for now to 800.....thanks everyone.....billy

[spectda]

When my HGB dropped to 7.0 my doc stopped all meds and told me this could get ugly fast. I was on 60,000 units of procrit at the time and had been for a while though.

Your body can adapt to 9 or even lower although when it slides as fast as yours it feels terrible. The other problem is that if you have any hidden heart issues it can be dangerous. Hopefully you have spoken to your doctor about this. Didn't you and your doctor discuss rescue meds before you started tx? What is the docs position on them?

I doubt a couple of days at 800mg with the decline in hgb you have seen will be that big a deal. You said that your hgb at the end of the first week was 12.7, what was it the day tx started before you took the meds? Did you have a cbc that day?

I would ask the doc to do an iron panel to insure that low iron is not the reason besides just absorbing riba really well that you are struggling. Don't take supplemental Iron unless you have been tested though.

procrit.com
"Evaluate transferrin saturation and serum ferritin prior to and during PROCRIT® treatment. Administer supplemental iron therapy when serum ferritin is less than 100 mcg/L or when serum transferrin saturation is less than 20%. "

Good luck,
Dave

[Trish77]

That's interesting and valuable information.  The concern in looking over that information is that the biggest risk to SVR with ribavirin reduction seems to be in the first 4 weeks, which Billy still is.  It's not as high a risk as P/R only but it presents the largest risk with regards to when a ribavirin reduction is introduced.  Smaller sampling size for the 0-4 week group than the 4 - 12 week group, however difference in SVR rate of 68% for those with ribavirin reduction in the first 4 weeks compared to 74% SVR rate for those with ribavirin reduction in the 4-12 week group, with the SVR odds increasing the later the ribavirin reduction is introduced - higher SVR rates for the those not getting a ribavirin reduction until 12 - 24 weeks and higher SVR rates still for those not getting a ribavirin reduction until 24 - 48 weeks.  There is a significant difference, to me, in SVR rates between those getting ribavirin dosage reduction in the first 4 weeks with an SVR rate of 68% compared to the other end of the scale with an SVR rate of close to 100% for those not getting a ribavirin reduction until the last 24 - 48 weeks.

So while reducing ribavirin doesn't drop the SVR rates to the same as P/R only, it does seem to have very similar results in that maintaining dosages is more criticial earlier than later in treatment.  

[lynda607]

I agree, procrit is the best course of action but it takes time to work.  If hgb levels are critical, dose reduction or transfusion can buy the time needed until the procrit is available and ultimately works.  With triple therapy, ribavirin dose modification apparently does not pose as big a risk of treatment failure as it does with SOC only.

"Time of first ribavirin dose modification did not appear to impact sustained viral response in patients treated with a telaprevir-based regimen."

http://www.natap.org/2011/EASL/EASL_41.htm

[Trish77]

Good luck with all that, Billy.  When do you get your PCR tests to check for virus levels also?  

Hang in there and keep us posted.

Trish

[working dog]

tonight i take shot # 4.....i will take the procrit if i can get it...i want to clear this virus and will do whatever i can stand......billy

[working dog]

thanks a lot guys...i reduced my dose to 800 riba for now ....tomorrow i'll get blood work done and see whats going on.....billy

[can-do-man]

But at what week were these dose reductions? Later in tx maybe not as much a factor. But working dog is in only week 2? Plus the ones that did relapse due to dose reductions, i wonder how they feel about that.

Theres procrit out there, treatment is shorter with these PI"s so less time needing it. Why should doctors risk someones future???

[lynda607]

"Conclusions: Anemia was more frequent in patients who received a telaprevir-based regimen than patients in control. In patients treated with telaprevir-based therapy, anemia as well as ribavirin dose reduction had no apparent effect on SVR rates as compared with patients treated with peginterferon/ribavirin alone. These data suggest that management of treatment-related anemia with ribavirin dose reduction appeared not to impact SVR with telaprevir-based therapy."


http://www1.easl.eu/easl2011/program/Posters/Abstract284.htm

[willing]

what curiouslady said. Drive the 1.5 hours, have them take a look at you. They may well have the setup there to run a CBC on the spot. RBV reduction, procrit, etc. all take days/weeks - you first need confirmation your levels are safe.

I believe it was spectda's Dr. that said that once you're far enough on the edge with respect to blood cell suppression, things can get ugly fast. Your Hgb drop so far hasn't been remarkable but it's  dropping  fast. Be safe.

[Mary4now]

Can you get some lab work and actually see where your hgb is?  You may be able to reduce, I did reduce but later in the game and it helped, but my hgb stayed low.
I think people respond differently at different times and I can see why you would want to stay in bed for 18 hours.
how is it when you exert yourself at all?  for example I could hardly lift my arms to fold laundry and when I walked up 8 stairs I had to sit at the top of the stairs to recoup.  
get the lab done, and see where you stand.
good luck

[curiouslady1]

Yes Call.  Surely he gave you an emergency number.  In bed for 18 hours a day is extraordinary.  

[nomorehepcliz]

I would not ask for medical advice on an internet forum - talk to your Doctor! we can tell you what our experience is, and give support but we are not medical professionals, and even if some of us are, we haven't examined you.  Call the doc.

[lynda607]

Yes, you can reduce to 1000 mg.  The Incivek is also knocking back your hgb.  Once hgb levels get in the critical zone, dose reduction or transfusion is recommended.  Procrit will work, but it has to have something there to work with.   Often times, the doctor will reduce ribavirin lower than 1000 mg so that the hgb will rebound more quickly.  

Time to consult with your doctor, if intervention is needed the travel time will be well worth it and may make the difference as to whether or not you will be able to continue with treatment.

[Trish77]

Billy, how much do you weigh?  There has to be a reason your doc went with 1200 instead of 1000 to begin with?  It's usually based on weight.

What about the procrit? Might not be a bad idea to go into the hospital before Monday (which is when I think you see your doctor again?) and have them run a hemoglobin test on you.   At the rate your hgb has been dropping, it may have continued to drop and you'll find out where you're at.  

I would very very seriously stress for the Procrit when you see your doc tomorrow.  I wouldn't want to suggest at all that you drop your ribavirin dosage on your own without consulting your doctor and you'll see him Monday as it is.  I would discuss ALL your options with your doctor on Monday and including transfusion if your hgb has dropped low enough.  

Hang in there, Billy.  Just take it easy and rest up even though it's awful to be in bed so much.  

Trish