GVHD - Burning mouth/tongue

[Mary4Mike]

Hello all! Just wondering if any post transplant pals here have experienced dry mouth resulting in burning tongue and lips? I guess my main question is if you have come up with something on your own to aid in the relief for this. My husband has tried the usual rinses for dry mouth, lozenges, etc. The dry mouth has led to cavities for the first time in years! I guess none of realized the importance of saliva.

Any suggestions would be appreciated.

[GoodDay5150]

Hi Mary, it's good to hear that your husband is mostly doing well. I do know about this, sometimes known by other names as well.

http://www.mayoclinic.org/tests-proc...h/faq-20058071


I did not use it for my mouth GVHD, but I used it once for severe dry mouth for some other reason a long time ago. And speaking of cavities, I have not had any since my trans 4 yrs ago, and my dentist has not noticed any mouth abnormalities post-trans. I do know that the pre and post trans treatment(s) can cause a lot of diff probs and that everyone reacts in a diff way.

Mario

[DanL]

I have experienced GVHD of the face (including lips) and mouth. For the lips, i have had the most success with vaseline lip balm (in a white and blue squeeze bottle) switching to carmex and occasionally burts bees wax. The rotation, and consistency ( 5 to 6 times per day) seemed to help out the most. Of course, continue with the treatments that the dr. prescribes.

My mouth GVHD has been almost directly tied to how frequently I use the dexamethasone mouthwash. when it was bad, I would take it four or five times a day. The dyrmouth components - reduce sugar intake,

Hope this helps.
Dan

[rar]

I have GVHD of eyes, mouth, and skin from the bottom of my feet to the top of my head. I got 6 cavities from dry mouth which is more than I had over the past 50 years. It is common.

For dry mouth Biodene and ACT are recommended. The ACT works wonders for me the other not so much. See your dentist, mine made some more recommendations including gums, candies and prescription tooth paste.

Ray

[Mary4Mike]

Thanks for the replies. We saw a derm yesterday and he noticed slight yeast on the tongue and again, slight inflammation of the mucosa. He couldn't see much on his lip. He did, however, take a biopsy of the lip and we are waiting for those results. In the meantime, he gave him a RX for clotrimazole troches.

We will give the lip balms a try. He used the Magic Mouthwash in the hospital prior and post transplant.

He too, has dry eyes. He had his tear ducts cauterized several years ago. It really hasn't helped much. He uses OTC drops. He tried the Restasis drops in the hospital prior to transplant, but developed a severe rash around his eyes.

All in all, he has very little to complain about in comparison to the way he felt before the transplant. No one believes he is 70. We are very thankful. He takes no prescriptions and hasn't for several years. Now, we pray that the lip biopsy is nothing. Thanks again!