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Old Sat May 28, 2016, 09:46 AM
PaulS PaulS is offline
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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 -
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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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