Chronic GVHD Mucositis Question
I am 15 months post allo transplant and have always had some minor issues with oral mucositis. Last Friday, it flared up badly, requiring me to avoid chewing lest I feel like I was chewing on razor blades. I got some Magic Mouthwash from a local oral surgeon (they actually label it that way...it's a prescription mixture containing lidocaine, etc.) which calmed the pain down, and I have been swishing regularly with Dexamethasone. The only thing that really changed recently was about a week+ ago my transplant doc finally took me off of the last 2 prophylactic antibiotics I was taking...acyclovir and bactrim. I know that acyclovir is used to supress herpes viruses and some of my lip lesions appear somewhat herpes in form. My cheeks and tongue are lined with small painful lesions, not what I would describe as herpes. As a precautionary move, I started taking my acyclovir again, until I can get to see the doc. I also had have some tenderness in my neck lymph nodes and jaw pain. I was examined by an oral surgeon and he saw nothing suggesting oral cancer.
SOOOOO, my questions are [b](1) Is it typical for chronic oral GVHD to flare up without any particular reason post transplant? I thought as it gradually got better it would stay the course, and (2) Has anyone had issues with oral GVHD in the absence of acyclovir? I'd be interested in hearing anyone's experiences with chronic oral GVHD. I know we're all different, but I'd like to get a feel for what lies ahead. In the meantime, my mouth is much better...it seems to be resolving. Whether it's just running it's course or the acyclovir kicked in, who knows. Thanks in advance for any input you might offer.
Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)