Oral GVHD flareup
 

Well, almost made it one year post MUD SCT without a GVHD flare up, but had an oral flareup yesterday (my 1 year anniversary is Jan 29). Frustrated and hoping the blood work I have done tomorrow just before my 1 year BMB hip poke still shows no additional signs of GVHD. This came out of the blue. I'm still on 50mg of cyclosporine 2xday & have been at this level for 1 month.

I know I've been really lucky as I haven't had a flare up yet & only a tiny bit of oral GVHD between 3 & 6 months post, this time however, my mouth has quite a bit & it appeared so fast. I just restarted Oral Dexamethasone rinse & Beclometh Oil (a custom drug created at my clinics pharmacy for GVHD) & hoping my 1 year appts tomorrow & next week go smoothly.

If anyone has other tips for managing the oral GVHD, please share

Dena,

Congratulations on the upcoming 1st anniversary of your BMT. For my 1st anniversary, my Mom loved going to buy "Happy 1st Birthday" balloons and telling the salesperson they were for her daughter. They were, but she was 72 at the time!

I too had some oral GVHD in the first couple of years post-transplant. It made the lining of my mouth bright red and felt like I'd been burned by hot soup. I was on immunosuppressants and oral Dexamethasone at the time. But it helped to stay away from mint-flavored toothpaste; I used Tom's of Maine apricot flavor, which they unfortunately don't make anymore. My dentist recommended Closys mouth rinse, which also helped reduce the inflammation.

After about 4 years, I was off immunosuppressants and my GVHD symptoms were practically nil. Then about a year ago (at 14+ years post-BMT!), I suddenly got white patches on my tongue that looked like canker sores. Turned out to be a flareup of oral GVHD. Since then, I've been using Clobetasol gel that was prescribed by an oral GVHD specialist at City of Hope. If I stop the gel for a couple of days, the sores reappear, but it's not a difficult thing to manage.

Hope this helps.

Regards,
Ruth

Thank you Ruth:). Funny story about your Mom. I would have loved to see the face of the store clerk.

Interesting about the toothpaste as I had just changed to a new type (Natures Gate natural) & it has peppermint. The previous Natures Gate one was spearmint, so yes, likely this impacted my flare-up.

Is the Closys mouth rinse different than the Clobestal gel? If they're different, do you just use the gel now? Also, do you prefer them to the oral dexamethasone rinse?

I started having some minor oral GVHD again in December after I got sick from eating shrimp. But it was very low level until I "indulged" on two 1oz beer tastings this week, which was also 2 days after I started using the new toothpaste. I felt a major change/flare up in my mouth 1 hour after drinking the beer. So no more of that for a while (& likely no more shellfish forever as I seem to have developed a shell fish allergy or intolerance - this also happened with crab & lobster in the fall. A bit bummed but I can definitely live well & happy without it).

Ciao

Dena,

I haven't been using the Closys rinse for quite a while, but answering your questions reminded me about it. I will go back to it now and see if reduces the inflammation. Closys is non-prescription. Although I originally got it from my dentist, I've since bought it at CVS.

The Clobetasol gel is different. It's a prescription with instructions for "up to four times a day as needed." At first it made my saliva run like crazy so I could only apply it while standing over the sink! Now I seem to be used to it so I don't have that problem. Still I use it mostly after I've brushed my teeth so I'm at the sink anyway.

I prefer both of these to the dexamethasone because I try to avoid steroids as much as possible.

I'm also intolerant of fish, although I do fine with shellfish.

Cheers,
Ruth