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Help for pain associated with acute GVHD of the skin/Success of photophoresis?
Dan L - Thank you for the both the info and the prayers; I hope you are doing well and counts continuing to improve.
Heather8773 Thank you for sharing your husbands experience.
Since my last post he had another EBV PCR done but results are pending- Urso was restarted and his liver tests are improving; Bili, Alk phis AST are normal and ALT is about 200; since no treatment specific for EBV was given they feel the EBV is likely not the culprit here;
Unfortunately the GVHD now involves about 80% of his body with rash or severe redness; no blisters fortunately and no open areas at all; Since the steroids did not control this they started on photopharesis - does anyone know much about it? They say they are trying this because they want to try to get him off steroids since his bone marrow biopsy D+30 shows persistent disease and they want to try and get as much GVL effect as possible.
The other problem now is he is in constant discomfort. He has other burning, itching, tightness , tingling or just pain all over the skin of his body. He can hardly tolerate anything touching is skin making sleeping nearly impossible -oxycodone, ativan atarax and topical steroids and aquaphor are of marginal help -
Does anyone know of anything that can help the pain/sensitivity associated with acute GVHD of the skin?
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