Anyone used Axatilimab iv infusions for chronic GVHD?

Posted by deb913 @deb913, May 15 6:28am

Hi - has anyone used Axatilimab iv infusions for chronic GVHD and what was your experience ?

I have oral and vaginal cGVHD that is not resolving after 7 months of systemic treatment, tacrolimus, jakifi and rezurock and doctors want me to start Axatilimab in a month.

My Mouth is mostly stiffness and burning, tingling feeling and general irritation with periodic mucoceles. I also get severe leg cramp multiple times per night most nights which I’m told can be caused by cGVHD. I have tried hydration, salt and magnesium but nothing helps.

I would like to know:
1. Had anyone tried Axatilimab and had it helped resolve your symptoms
2. Has it resolved anyone’s symptoms that I described?
3. Were there any side effects?
4. Were there any other treatments you tried instead of Axatilimab?
5. Approximately how long into your cGVHD symptoms before you tried Axatilimab?

Thank you so much. I appreciate any insights.

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