Mysterious mouth sores going on 16 years

Diagnosed ITP in 1972, did Prednisone for almost a year, then removed spleen in 1973. In my case this helped and my platelets are pretty much normal all these years later. In 1996 I noticed my lips were cracking and bleeding, I blamed it on chapped lips and the dry New Mexico climate. During the years this has progressed to sores on my tongue, gums, inside cheeks (the worst of the sores), swollen lips, and now a dime sized sore on my face that'll stay for a couple months, go away and then just reappear. My chin from my lips down to the point of my chin has a red looking rash that oozes. Plus today I have a sore on my bottom lip that looks like the skin was removed, about 1/2 inch long. At times the sores are so bad that I can't even tolerate drinking water; lots of foods burn my mouth. Eleven doctors later they have tested for herpes, thrush, food allergies, cancer, etc., and I'm at my wit's end. Had a biopsy almost 3 weeks ago where the oral surgeon removed one sore from the inside cheek, about 1/2 inch. Hoping this will finally solve this painful mystery. Has anyone else had anything like this? I mentioned to my primary doc that pretty soon I might just write to the large teaching hospitals to see if anyone has any insight. Would appreciate any help you can offer. Thanks!

Have they looked at Discoid Lupus? I don't remember anyone here ever mentioning anything like it.

That's what I was thinking. There's something called mucosal DLE (discoid lupus erythematosis) and it can go along with low platelets so seems an obvious thing to look for next.

Sandi & Ann, No one has ever mentioned Lupus, but I'll definitely ask my doctor on my next visit this Tuesday. I'd hate for it to be Lupus, but at this point I want to know what it is so we can treat it properly. Thanks.

Have they ruled out Mucous Membrane Pemphigoid? It is also auto-immune, occurs mostly in older women (not sure how old you are). Despite it's name, some 20% of the blisters can occur on non-mucosal tissue, usually the face and neck. It is very rare, so often the diagnosis is not made for awhile, as few doctors are familiar with it.

I have a mid-sixties female patient with it, and it was extremely painful for her, really interfered with her eating, so she'd lost a lot of weight. I guess there are many degrees of severity with it, from just being a mild annoyance to really debilitating. Many of the treatments seem to be similar to ITP--Prednisone, Dapsone, Cellcept and Rituxan, which seems to be the most successful of the bunch. My patient was not responding to anything, and was having many side effects. I treated her constitutionally with a particular homeopathic remedy, and she has done well on that for about a year.

Anyway, you might google and read about it to see if this seems a possibility. Remember, there are other types of pemphigoids, but yours sounds like the mucous membrane kind.
Good luck finding out what it is!
April

Not Lupus, Discoid Lupus. It's not systemic like SLE and is mostly skin related.

Biopsy came back today. Lichenoid Mucositis caused by medication. Only have one prescription, an Otc allergy med and take Advil for arthritis. Told to stop Advil immediately and if this is gone in the next couple of weeks we'll know what the culprit is. If not, we'll stop one of the others, and do process of elimination. Thank you all for your suggestions; like my mom says, growing old is not for sissies. April, I'll be 62...in April.

Thanks all ~ passed along all suggestions to the docs but they still have no clue. This has bugged me for years but now I'm getting depressed and wonder if it would do any good to write to the big teaching hospitals. Guess it couldn't hurt.

Well, my only other suggestion is this: I had a friend who had mouth ulcers once and no one could figure out why. After years of trying different things, she found it was a reaction to toothpaste. The only brand she could use successfully was Rembrandt.

Thanks Sandi. Doc had me stop toothpaste over a month ago and just using baking soda. I know; this is a puzzle. Going to call snd gind doctor #14 on Monday. Mouth real bad this week but feeling guilty worrying about it when others have more problems than this.

Don't feel guilty! No matter what anyone has, someone is always worse off. I'm sure that would get frustrating.

Finally gave up on local doctors. My primary thinks its the worse case of lichen planus hes seen but no success with treatment. Fingernails are now also very sensitive. Still getting the mouth and now face sores. Running low fevers (99-100) often. I called and booked appointment at Mayo Clinic Scottsdale in July. Can't wait, new mouth sores and it was tough trying to talk at work today. Face is swollen and I'm doing a great impression of a squirrel storing nuts. I'm hoping the Mayo staff will help me finally find some relief.

How about Behcets Disease? Just thought of it because it's an interest of my immunologist.

Ann, primary doc ruled that out but hoping Mayo Clinic doc will get to the bottom of this. But I will mention it.

Today was Day 11 in Scottsdale, I gave up on my doctor and 13 others in my area and got appointment with Mayo Clinic. Amazing people! Extensive labs and allergy testing. All areas on lips and face are cleared, and inside my mouth the sores are almost all gone. Turns out I'm allergic to all sorts of colorants, flavorings and fragrances used in all of our everyday products, cosmetics, toiletries, etc. Even my 50-something year old fillings. Thank you Sandi and others for listening to me the last few years. Sandi, you did mention once about a friend being allergic to toothpaste, I had asked my doctor and he said no. Guess I'm changing doctors again.

I'm so glad you got your answer! :laugh:

And still sore free!