Imbruvica for Graft Versus Host Disease User Reviews
- GGL...
- Taken for 1 to 6 months
- December 7, 2018
"Started Ibrutinib (Imbruvica) on 10/22/2018 (7 wks ago) for cGVHD (Chronic graft-versus-host disease) arising from stem cell transplantation (SCT) (matching female sibling) in 2014 to treat Mantle cell lymphoma (MCL). cGVHD (skin, eyes, mouth & subcutaneous tissue) resistant to frontline treatment (Mycophenolate & prednisone - ave dose 20mg). Experienced quite severe diarrhea after 2 days. Resolved after 5 weeks after taking loperamide, which is no longer required. Also experienced increased fatigue and maybe slightly more cramping (was already getting some cramps which is common for cGVHD). Immunoglobulin levels have dropped will require an infusion. Some early signs that skin symptoms, i.e., scleroderma, might be reducing. However, too early to tell effectiveness, suspect it will be another 30-60 days before starting to see if it will have an impact."
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"About me: AML, stem cell transplant survivor with GVHD. How Imbruvica helped: I started Imbruvica in 4/17. Prior to taking it, I was completely debilitated. After 4 full months on the drug, I noted marked improvement. Now I am able to walk, light lifting, and carry out regular activity with much less fatigue and pain. My skin GVHD is not showing any symptoms. It's been a godsend! Side effects: I noticed cramping at about 5 months and back and joint pain at 8 months. The cramping became severe, however, it is managed well with tonic water. The pain is extreme at times - but so far outweighs the GVHD symptoms."