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Old Fri Dec 5, 2014, 05:17 AM
SLB SLB is offline
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Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
Hi Chandra,

I am 21 months post transplant and still struggle with muscle soreness and yes feels like my tendons are tight. My wrists are especially problematic, really sore to flex back and quite weak. I have tried short courses of steroids that do seem to help temporarily but always comes back after about a week. Unfortunately the steroids disrupt my sleep so much that I hate being on them! Recently my arms are also sore. The doctor really doesn't know why this is, so really I just live with it! (Figure the is the least of my worries). For many months after transplant my upper leg muscles were really weak (still are really) so getting up (especially after sitting for awhile) was interesting! At that time, the doctor blamed muscle wastage from steroid use (to control GVHD).

Must say I am jealous and amazed you are off all meds already! That's fantastic. I tried weaning off the cyclosporin but flair ups of GVHD stopped that! Hopefully all going well the doctor is going to try to decrease it down again in January.

So really I have no insight into why or what it do about it but to say I to suffer too! If you find out any solutions, keep me posted!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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