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Mouth tightness GVHD - uncomfortable to smile or fully open mouth

Posted by deb913 @deb913, Nov 16 8:38am

Hi,
I had been diagnosed with GVHD at 11 months post allogeneic sct and have gone back on all my previous immunosuppressants plus prednisone and jakifi. I recently. saw my doctor who said the tightness I feel in my lips ( which has not improved much) can sometimes become fibrotic and permanent but she also said it may get better and we need to give the jakifi more time to work (I’ve been on immunosuppressants and prednisone for 6 weeks and jakifi for 1.5). I was horrified to think my mouth could stay like this since it’s uncomfortable to fully open or smile.

Has anyone else experienced this and are there other treatments I can try. I asked chat gpt and it said adding things like these 3 may help prevent fibrosis: 1. Topical ointment like Clobetasol 0.05% ointment or fluocinonide 0.05% or Tacrolimus 0.1%, 2. Adding Belumosudil (Rezurock) - This medication specifically targets fibrosis through ROCK2 inhibition. 3.Pt mouth exercises.

Has anyone else experienced this and effectively treated it? I’m also kind of frustrated that my doctor did not offer even one preventative option and made it sound like my current treatment plan was the only option and the fibrosis just may or may not happen.

I do plan to address these other options with my doctor and I know that chat gpt is not a great source for true and accurate medical treatment so any input anyone has is very appreciated.

Thanks so much.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 24 9:32am

Hi Deb, It’s been several days since you posted this new discussion and I had expected to see some replies for you. From my understanding fibrosis and scleroderma can be a troubling but not uncommon manifestations of gvhd. Even at 6+ years post, when I go for my follow-ups my doctor does quick skin pinch in several areas of my body to make sure there’s not scleroderma taking place.

What’s concerning is your doctor’s lack of response in trying to offer more options for treatment. Though if you’ve only been on Jakafi for about 2 weeks, that may not be enough time to see results yet.
Did you have any oral lesions during your recovery or was this just noticed solely on the tightening of your lips and cheeks?

I had a few areas on my tongue, but not on my cheeks, for which I had liquid dexamethasone (hold in mouth for 5 minutes and spit) and also the tacrolimus 0.1% ointment. Both worked amazingly well to halt the gvhd. I no longer rely on the dexa but occasionally still dot my tongue with the tacro ointment.

I think you mentioned a while back that you had your transplant in Atlanta? What would you think of getting a 2nd opinion on your GVHD from Mayo, Jacksonville? Or possibly Dana Farber in Boston? Facilities such as these, with larger BMT transplant centers, may have a more comprehensive program for treatment gvhd. You might be able to get a tele-conference from either of those places.

I hope your doctor is open to exploring other options for you such as Rezurock. Have they offered or suggested any oral pt?

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deb913 | @deb913 | Nov 24 4:34pm
In reply to @loribmt "Hi Deb, It’s been several days since you posted this new discussion and I had expected..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi Deb, It’s been several days since you posted this new discussion and I had expected to see some replies for you. From my understanding fibrosis and scleroderma can be a troubling but not uncommon manifestations of gvhd. Even at 6+ years post, when I go for my follow-ups my doctor does quick skin pinch in several areas of my body to make sure there’s not scleroderma taking place.

What’s concerning is your doctor’s lack of response in trying to offer more options for treatment. Though if you’ve only been on Jakafi for about 2 weeks, that may not be enough time to see results yet.
Did you have any oral lesions during your recovery or was this just noticed solely on the tightening of your lips and cheeks?

I had a few areas on my tongue, but not on my cheeks, for which I had liquid dexamethasone (hold in mouth for 5 minutes and spit) and also the tacrolimus 0.1% ointment. Both worked amazingly well to halt the gvhd. I no longer rely on the dexa but occasionally still dot my tongue with the tacro ointment.

I think you mentioned a while back that you had your transplant in Atlanta? What would you think of getting a 2nd opinion on your GVHD from Mayo, Jacksonville? Or possibly Dana Farber in Boston? Facilities such as these, with larger BMT transplant centers, may have a more comprehensive program for treatment gvhd. You might be able to get a tele-conference from either of those places.

I hope your doctor is open to exploring other options for you such as Rezurock. Have they offered or suggested any oral pt?

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@loribmt
Hi Lori,
So nice of you to reply. I spoke with my NP and asked her about Rezurock and she said they wanted to give Jakifi more time to work before changing medications (my next visit I will have been on Jakifi almost 5 weeks). And she said if I'm still having problems at that time then they'd likely try Axatilimab infusions over Rezurock since Rezurock has a similar mechanism of action to Jakifi whereas Axatilimab works differently than them Rezurock or Jakifi. That plan made sense to me, but you're right that it might be good to get a second opinion. I keep hoping it will just get better. LOL - honestly the constant vigilance and doctors' appointments just gets old doesn't it? But I know I'm fortunate to be doing as well as I am, despite the GVHD and fatigue issues. Thanks again for reaching out.

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