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Avatar universal

low riba doses

Hi everyone, just got back from Ohio and had forgoten how bad the cold and snow can be.  If its 40's in Florida I am snugged up and going no where.
   Will take shot # 3 on Wednesday and thankfully at least so far little or no sx that I can tell.  I am still on low dose steroids following the long pneumonia I had the last 4 months.  I have labs tomorrow and hoping to eliminate or at least further reduce them.  Do you suppose the steroids are causeing the lack of sx.  Its not that I'm complaining about the lack of feeling bad, its just that I've done this before and they always made me pretty dilibitaed for a day or two.  Makes me wonder if its working
   Also I take only 200 mg riba twice a day which seems to be far less than anyone on this forum that I've read about.  I did have an anemia incident last time but only once and after I was well in to the treatments.  Anyone else think this might lower chances of svr?  I think they treat a little different because I am post transplant but even the transplant people here seem to take higher doses.
  All of the sx attributed to the riba ,I don't think I've ever experienced.  I always blamed the Pegysus.
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Avatar universal
Unfortunately, I can not explain the low dose riba and the length of time.  I did not know about this forum and am embarrassed to say I did little reseach.  These people saved my life and I trusted them completely.
  I was treated with procrit(once a week) and neupogen during the later part of the treatment(twice a week)..  Hbg stay around the 9 mark and wbc in the 4 range with those rescue drugs.
  I will ask these questions now that my head is out of the sand.  My hbg did drop once and I had to have a transfusion but not until I had taken it for some time.  The only reason I can think that thet didn't increase it was that sob was always a problem to some degree.  Don't know if they thought it would cause more sob .  Maybe something in the way of infection was already going on.  Also my platlets were in the high 50's so maybe they felt more riba would drop that
  Bottom line, I did not ask enough questions.  Just happy to be alive, transplanted, blessed and felt I owed all involved to be as compliant as possible.
   Took 3rd shot this afternoon.  Lab values from yesterday showed enzymes down considerable except the GGT.  H& H is good.  Fasting glucose is 182 so I need to call and see if that is steroid related as I suspect it is
  The biopsy report was difficult to interprupt for me but basically seemed to indicate that although there could be some overlapping in findings that is was the return of the virus and not rejection that was the main issue.  I think they should have held off a little on the steroids and started the anti-virals sooner
  I go for a ct chest to be sure the pneumonia has completely resolved.  I bet is has because I feel better than I have in a long time. Thanks for the interest
Helpful - 0
179856 tn?1333547362
Why in the WORLD did they let you get to week 70 without being UND?  I am under the impression if you are not UND by week 24 your chances are dreadfully bad for SVR.

I simply cannot believe a doctor would encourage you to go to week 70 without being UND.  How long did they believe you would do treatment? Another year?

My God.

The 400 Riba is still so low for a geno 1.  Our chances of success are 50/50 at BEST and to reduce the riba does reduce the chances.

Why are you not on Procrit and taking full dose riba?  I dropped SIX points in just oveor a week from taking too much ribavirin - but that was fixed with the rescue med. I never dropped the riba because it is crucial to do all of the meds on protocol. It was hard but necessary.

I must have missed something and forgotten (stupid head that I am lately) but I don't understand.

PS PREDNIZONE seems to be a BIG problem for those of us on tx and has caused relapse in other people here as well.

Helpful - 0
179856 tn?1333547362
I would think as everyone above does that your lack of sides is probably from the low dose riba.  While IFN is a horror and definitely caused me major problems -I really feel that most of my sides came from the ribavirin.

You really really really need to get a very early PCR to see if you are responding. I've never heard of anyone doing only 200 and have no idea how low the odds might be since you aren't even close to weight based.

And remember - some people get no really bad sides at all.

What exact steroids are you on?  I have read many times that prednisone can completely and totally destroy treatment and cause relapse or something.

I know you had pneumonia but did your PCP consult with your hep doc to discuss potential problems of taking them while on treatment?
Helpful - 0
Avatar universal
Mike, I thought that maybe the low dose thing was more common in transplant recipients, but by your answer apparently it isn't. Hopefully, Sallyo is seeing a liver specialists who have experience in treating difficult cases and will get a reasonable explanation for her low dose of riba. I certainly would want to know why my doctor would deviate from SOC. All studies suggest weight-dose riba sigficantly increases the chances of SVR, especially early-on in treatment. Sally, as mentioned, definitely push for that 4 week viral load test to see if the virus is being killed.

-- Jim
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Avatar universal
I don't know enough about your situation to even hazard a guess. As Jim said, if you have compromised renal function such a low dose of ribavirin might be adequate. I wish I had some idea but really, I don't have a clue. Mike
Helpful - 0
Avatar universal
Thanks for all of the response.  I am geno 1a and this is my second time treating. I became und after 70 weeks the first time and was always on the 400mg riba/day.  Stayed UND x about 4 mos on a Bayer test (615) and then vl returned.
  I was on Predisone for the pneumonia when the virus came back detected but docs felt I had no choice.  The hepatologists and transplant team were in touch with the docs treating the pneumonia.
  Now I am on Medrol. The transplant people put me on it for acute rejection after a biopsy.  The biopsy showed a combination of acute rejection and viral response.  Now the viral load went to 8 million and they started the Peg at 135mg and riba 200 mg twice a day.
  Had labs this morning.  Hopeing the enzymes will be down enough to stop or reduce the medrol.  Since I have returned to work (at the hospital) I will be able to access my own results tomorrow.  The vl of course will not be back for about a week.
   When I talk to the nurse co ordinator in the next couple of days, I will ask her why the low dose riba.  When I started last time I was about 120 lbs.  Now, thanks in part to all of the steroids I am about 150.
There is simply not enough food in this world for me to eat on this stuff.  haha  Last time I treated (without the steroids)  I could hardly force food down.
  Great having all of you guys around. I don't write a lot sometimes but just know I'm always out here keeping an eye on everyone
Helpful - 0
146021 tn?1237204887
I was just reading about 400 mg of ribavirin vs 800 last night. I believe the study was for geno 2's however. Aren't you a 1? Wish I had a list of everyone's stats. Anyhow the study showed little difference is svr for those treated with 400 instead of 800 of the ribavirin.
I was looking up weight based ribavirin for someone who is a geno 10 and they are treating like a geno 3. Good luck!
Bug
Helpful - 0
Avatar universal
Lots missing from this picture, but the one sticking out is why are you on such a low dose of ribavirin? In general, unless you have kidney or other ribavirin specific issues, weight-based ribavirin is an important factor in achieving SVR.

Without knowing any details, I hope at least: (1) You are being treated by a liver specialist (hepatologist) who has lots of experience in treating difficult cases, and specific experience in treating post transplant cases; and (2) if the objective of treatment is SVR, then your viral load should be monitored frequently to make sure that this objective (SVR) realistically can be met, especially with your low ribavirin dosing. Personally, I would have my first viral load test the day before your next shot, and then weekly until either you became non-detectible, or the doctors felt your response wasn't fast enough, so they could then reascess.

I flagged Mike Simon because Mike cleared the virus post transplant and he therefore knows a lot more than the rest of us on this issue.

All the best,

-- Jim
Helpful - 0
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