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Any Suggestions:
Hi All
Its been a while. When thing were very good, I was superstitious and didn't want to announce it. When things have been so-so, I didn't want to tell anyone cause I thought I was close to good news. And when thing were not the best, hey who wants to hear about that. So I am almost 3 yrs out. My allo transplant took place 1/28/12. My current issue is managing GVHD and mobility.
I have reduced Prednosine to 1.5 mg a day. Last January it was believed GVHD had gone into my lungs and I was put on 70 mgs along with a FAM study. (6mos on Fluticasone, azrithromycin and montelukast). I had chronic skin GVHD and had been on 20mg and less of Prednisone since stopping Cyclosporine in February 2013. I was previously on it for acute gvhd of the skin for a few months and 2 yrs prior for PMR (polymyalgia rheumatic). I remain on the FAM drugs though reduced the Fluticasone to 220mcg from 880.
Tapering has been very painful. I reduce at .50mgs now.
I began losing muscle strength in April. Now in December I still cannot climb stairs well, walk or stand. There does not seem to be any muscle strength. I am in Physical Therapy and Acupuncture. I have seen an Orthopedic dr., a Rheumatologist, and a Neurologist and have had cat scans of my middle and lower back. Their response are PT and pain pills.
My hope is stopping the Prednisone will allow my body to properly feed my muscles. My questions are:
1. Is this possible? Will I gain muscle strength back?
2. What Is a better med for GVHD. I told my dr. no more Pred. She wants me to stay on for at least the holidays and is afraid the GVHD will move to my organs.
3. Is it worth seeing an Endocrinologist for my muscular problems?
4. Any alternative medicine suggestions?
P.S. My ferritin has moved back and forth between 5000-2350. I have had 8 phlebotomies, but the numbers go back up. Dr said it was due to the GVHD and not to worry, lots of people have higher numbers. No transfusions since 11/12 following my blood flipping over. All numbers good. EOS a little high.
Peace
Donna J.
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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