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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Lori, Volunteer Mentor | @loribmt | May 31 8:30am

Hi Deb, Just checking in with you to see how you’re doing and if you’ve begun your treatment with Axatilimab yet. I’m really sorry you’re experiencing so many issues with gvhd. We go into these transplants hoping for the best outcome. Each of us have such unique chemistries that it’s impossible to know how our bodies and the new immune system will ultimately mesh.

There was an article in the New England Journal of Medicine regarding the positive success rate of Axatilimab for Recurrent or Refractory CGVHD. So this new medication will bring you some much needed relief.
Here is the link to the article. You should be able to read through one time without a subscription. https://www.nejm.org/doi/full/10.1056/NEJMoa2401537

Have you been on https://www.nbmtlink.org site? They have several podcasts regarding gvhd.

deb913 | @deb913 | May 31 9:30am

Hi Lori,
You are so kind to check in. I start my axatilimab treatments in June and hoping they will help. I will look at the links you sent - thank you.

Although my issues (oral and vaginal GVHD) are not life threatening (which I’m thankful for), they greatly impact my quality of life. One big thing I’m realizing is how important it is to be our own advocates- and to read the doctors notes - because if I had I would have realized that a doctor incorrectly diagnosed my vaginal GVHD as simply menopause which delayed proper treatment for months. That’s just one example- lol once I get a list of what helps I intend to write in to help others but right now it’s not clear what if anything is helping.

Thanks again.

Lori, Volunteer Mentor | @loribmt | May 31 12:42pm

In reply to @deb913 "Hi Lori, You are so kind to check in. I start my axatilimab treatments in June..." + (show)

@deb913 Oh my gosh, Debbie, the delay in treatment for the early gvhd is really sad! I’m so sorry symptoms progressed as far as they did before the ‘ah ha’ moment! From my own experience I know gvhd can come on very subtly but usually our transplant teams pick up on things pretty quickly. My most prevalent issues were atypical, centering on my spinal cord. Those symptoms were so subtle until they were cataclysmic. But usually skin, vaginal, oral and digestive tract issues are not difficult to diagnose as gvhd by the transplant teams. Beyond the transplant world communicating with doctors who aren't familiar with GVHD is frustrating!
We absolutely have to be our own advocates. Especially once we’re back in general population receiving medical care.
Was this your transplant team doctor that missed the early gvhd?

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