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Old Sat Aug 26, 2017, 10:15 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Joan,

I have not had a PET scan but maybe my experiences can help you.

There have been a few things that have caused me terrible bone/joint pain through the years.

The first is tapering cyclosporine! When I was tapering cyclosporine it would exasperate any future-arthritis issues in my body. For me, it was my knees and feet. The pain was so bad that I had trouble walking and thought I would never be able to do so normally again. When I stopped tapering, the pain went away. Others on this forum have experienced this same thing when tapering cyclosporine.

The second thing that has caused me great bone pain was when my marrow was in a big state of regrowth. Usually after these episodes, I would see a jump in one of my counts. I am guessing this is analogous to painful growth spurts in healthy teens, increased blasts in leukemia patients, or bone pain experienced by those taking WBC growth hormones. However, in AA patients the bone pain is a good sign.

Another thing that have caused me bone/muscle pain (it is hard to tell which when you are experiencing it) is magnesium deficiency. Cyclosporine is notorious for depleting magnesium. So have yours checked and supplement if necessary.

Finally, if your iron stores are empty (which would show up in your BMB) this can cause restless legs syndrome when you try to sleep. It is actually pretty painful, but this is probably not your situation, as your pain is in your back. I am just throwing this out there as another source of bone/muscle pain.

You are tapering off cyclosporine pretty early. Have your counts fully normalized and been plateaued for months? The latest thinking is to stay on cyclosporine for at least a year to allow time for your marrow to regenerate. I am curious who you are seeing, as I live fairly close to you. Some doctors are very eager to taper patients off cyclosporine, and that is not always a good thing if you are tolerating it and your counts are still heading up!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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