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Old Sat May 28, 2016, 03:46 AM
rainbows and glitter rainbows and glitter is offline
Join Date: Nov 2012
Location: Alaska
Posts: 11
Working my self to death with gvhd

I have GVHD, the skin on my legs is sore and splitting open, I have horrible neuropathy, probably from the prograf I am back on. I take 5mg a day. I have uncontrollable muscle spasms despite being on tizanidine, duloxetine, and lyrica. I am also 31 and a bartender in a very busy bar. I make good money, even though now I can only handle three nights a week. I can't ask for more time off or less days they will just let me go. I never got help from any social worker or doctor to receive any kind of help or assistance. I have to work. Please, is there anything to help with the neuropathy? And has anyone experienced GVHD in your nerves? Sometimes I get pangs of pain in my head too.. I'm afraid I have GVHD of the nerves...I have it in my skin, muscle tightening, in my eyes, and mucous cells. Is there anything that can be done? I can't lose my job.
27 year old female diagnosed MDS RCUD 2012, GATA2, multiple carcinomas in-situ, SCT 10/03/2013 @NIH, chronic GVHD starting 11/2015
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Old Sat May 28, 2016, 09:46 AM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi R&G - sorry you are having such a hard time with GVHD. It looks like you are in Alaska? Is your doctor experienced in treating GVHD? Are your transplant doctors involved in treating the GVHD?

Did the neuropathy and spasms show up once you started the Tacrolimus - or did you have some before? Are they monitoring the level of Tacrolimus in your blood? Are you on anything else to treat GVHD? Steroids? Are you using steroid cream on your skin? Moisturizer? Did they put you on the other drugs after you had GVHD and were given Tacrolimus? Were you on tacrolimus before - and did you have any reaction then?

I've been on tacrolimus since my transplant in September - they always check the level in my blood and if it gets too high they lower the dose - When I had a flare of acute GVHD they gave me prednisone and eventually Rituxin that worked very well - I was also on MMF - I also used a powerful steroid cream and moisturizers on my skin - I'd think some of these options - particularly steroids, cream and maybe Rituxin if all else fails might also be options. If you're having a bad reaction to the tacrolimus or if its not working there should be other drugs they can try.

I have some neuropathy in my feet that I use Topricin cream to treat - seems to help although can't be sure its not just a placebo -

Sorry for asking so many questions -
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Mon May 30, 2016, 02:00 PM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612
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.

Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Tue May 31, 2016, 02:37 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 131
Hi Rainbows and Glitter. MDS is very rare in people as young as you, but you probably already knew that. I have a cousin who is about 70 who has a friend; (abt the same age as my cousin), that had MDS and went through a stem cell transplant in 2011 right before I had mine. I spoke to him about his experiences and what to expect. This individual also had cancer earlier in his life and those treatments prob weakened his bone marrow. Ruth Cuadra is correct in regard to photophresis. It seemed to help me w/ my GVHD. I was also treated w/ nilotinib, and or imatinib off and on for a few years as well. I have posted a number of comments about my treatments that you may find helpful. Good luck in your treatment.

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