Dear Rainbows & Glitter,
You are right that prograf can cause muscle spasms. I also suffered muscle spasms after my transplant, mostly in my hands and feet, and was eventually switched from prograf to cellcept, which was easier for me to tolerate. While I think time has reduced the severity of my symptoms more than anything, I do get relief from taking gabapentin, 200mg twice or three times a day, without any sleepiness that many people experience. My doctors have said that the daily limit for gabapentin is 3000mg, so there is a lot of room to experiment with the dosage to see if you can get some relief. And, gabapentin is a very inexpensive medication.
With regard to your skin GVHD, I wonder if your doctor has talked to you about photophresis, sometimes called extracorporeal photophresis or ECP. ECP is a process in which blood is taken from one arm (or one lumen of a central atrial catheter), passed through a cell separation machine that filters out the leukocytes (white cells) and mixes them with an agent that activates when exposed to the ultraviolet light. The cell mixture is then returned to your body via your other arm (or other lumen of your catheter). Here is an NIH article that is a few years old but provides a good description of the process:
The role of photopheresis in the treatment of graft-versus-host disease
Hope this helps.
Regards,
Ruth