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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 18 8:57pm | Replies (402)
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@jenmkr63

Hi!
Thank you for your advice! I am using the dexamethasone oral solution and the ointment but so far it hasn’t really helped much. I’m glad you had success with it so I’m encouraged to keep using it. I use Triamcinolone Acetonide dental paste as well. Some of the spots on my tongue went away but the sores in my mouth are taking longer. 😊

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Replies to "Hi! Thank you for your advice! I am using the dexamethasone oral solution and the ointment..."
Lori, Volunteer Mentor | @loribmt | Sep 9, 2023

Hi @jenmkr63 When I have a flare up on my tongue, the usual dose of Dexamethasone where it’s held for 30 seconds and then spit out, doesn’t do much. So during those times I’ll hold the Dexa on my tongue for 5 minutes then spit it out. No eating or drinking for 30 minutes after. A few weeks of that and my mouth returns to a more normal condition which I can then control with the normal dosage.
I also use the tacrolimus ointment on the more serious spots on my tongue…more often than twice per day during flares.
Of course with any change in prescription directions it’s important to check with your clinician.

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