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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ... |
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#1
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cyclosporine maintanence for PRCA?
We got good news today...my husband's Hgb is up to 8.1, retics at 1%, and no transfusion this week. His dosage is 100 mg twice a day at least until his Hgb is closer to normal range, and then he'll start a slow taper. My question is if anyone with PRCA stays on cyclosporine indefinitely, or is there always a taper?
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#2
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I always needed a little prednisone to make the cyclosporine work. It is a balancing act - an art, not a science. I ended up only needing 2.5 mg every other day of the prednisone.
I have only been able to get off of both of those after about four years once they included Danazol in the mix. Now, I only use the Danazol. I could see improvement very slowly after about nine months. Once my Hg got to 11 they started to reduce the dose of cyclo. Nothing with these conditions seems to work quickly.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#3
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He responded so quickly (4 weeks) the first time on cyclo, we're still getting used to this slower response being more of the norm. But I was surprised that his doc is planning to taper completely at some point, I don't know why I assume he'll need ongoing med support, and I'd love to see research data either way... does it exist?
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#4
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Quote:
There has been discussion on these boards relating to AA as to whether a taper should be slow or fast after ATG. I don't know if anything was decided, but I would vote for slow. That is why I go to Dr. M. He has the most patients with PRCA. But I guess your guy has more with PRCA/CLL. Rare diseases are hard to study.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#5
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Looking for feedback
Quote:
Last edited by clearwaterman007 : Sun Sep 28, 2014 at 06:40 PM. Reason: spelling |
#6
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Interesting. My brother got Lupus after he had Mumps. He was initially diagnosed with ITP. He was given a Sulfa drug with the Mumps because he had a chest infection as well.
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#7
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Yes, mumps and thymoma can cause PRCA. Pathologists don't look for the rare PRCA. That is why it takes so long to find it.
Are you allowed to go outside the VA system or out of state? Are the VA doctors allowed to call outside experts? I assume you are in Florida.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#8
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Yes our doc can call other docs outside the system. We live in NC now.
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#9
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Quote:
http://my.clevelandclinic.org/staff_...?doctorid=4362 He will be very happy to talk to your doctors. Call the "Desk" Let me know how this works out. There is a woman on Facebook here in Dallas who goes to the VA. We only exchanged messages. But it sounded like she needed some help.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#10
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Thanks for the resource. We will pass it on to our doc.
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#11
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__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
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