Tongue / Mouth Ulcers

[ingemlb]

I was sent a private message re my mouth ulcer so I thought I would post a topic on that subject as I can't remember now if I covered it elsewhere. Hoping this may help others.

I had over the last few years increasing flareups of mouth ulcers/sores that were quite painful but luckily never took long to go away. However by the time I was admitted to hospital on the 21st Jan this year I had a whopping big ulcer on my tongue that looked like a crater. It was extremely painful. I also had on the same side of the head massive ear ache, sore jaw and head and sore neck. In fact the pain was so bad during the night I had to ask for extra morphine shots but even those didn't really settle it.

When I was admitted I had the red eye issue, the tongue ulcer, sinus flareup, cough, bowel issues, stomach ulcers and a very nasty vasculitis causing pains, swelling and stiffness in all joints. No amount of pain meds solved the pain. They did heaps of tests and discovered the vasculitis and then started the Pred and that immediately reduced most pain apart from my exploding head.I was only able to drink fluids or eat very mushy food as any attempt to chew was intolerable.

I saw an ENT specialist who checked everything and said the pain was all referred pain from the Tongue Ulcer.

My Rheumatologist at this stage thought I had Churg Strauss Syndrome. I looked up some case studies on the internet and found a page which had some amazing photos. I found myself looking at a chap with the same red eyes, identical tongue ulcer and some sores on the skin that looked like some I had had coming and going. When I read up about the stages of Churg Strauss I was convinced they had the right diagnosis because it seems to start off with an asthmatic cough (which I had from 2002 for several years) then 8 to 12 years later the next stage is the bowel and gastric ulceration and finally the Vasculitis. Fitted my profile perfectly. Only issue was I was no longer asthmatic. (fixed that with the other protocol I think or maybe it was always caused by the sinus issues in the first place) So then the diagnosis swapped to Wegeners ....

Ok back to the Tongue Ulcer. They tried steroid creams. Anaesthetic cough lollies, anaesthetic gels, some sort of baby teething lotion but NOTHING improved the pain and in fact applying the steroid cream which was thick as glue in my opinion aggravated the ulcer. Having 6 big lumps of tissues removed from the ulcer for biopsy didn't help much either.

One day a nursing friend from the US emailed me that she too suffered terribly with the pain from Tongue Ulcers and had found a stuff called GELCLAIR used in a lot of Oncology Wards. It's ingredients sounded fairly harmless and you apply it every 8 hours so it gives long-term cover. It coats the ulcer and protects it from all the acids in the mouth. I found out it was available in Australia but the oncology ward I was in didn't use it and my specialist had never heard of it. But she managed to order some in and it WAS AMAZING. From the first time I used it the referred pain disappeared. I was able to tolerate the pain of the ulcer, had to keep eating mushy food but at least I could live with it. The product says it coats the ulcer but also enables healing. The product comes in a box with enough sachets of thick gel that is mixed with a bit of water before you swish your mouth with it for a minute then spit it out. Each box has a week's supply of sachets. But it's not cheap. I had to pay AUD 90 for a box I bought to take home with me. Luckily the hospital recovered their cost from my health insurance. I needed a bit over 3 boxes before the ulcer was totally healed.

My doctor was so enthusiastic she is now using it for her cancer patients. Its a swiss product. Here is the link to their site:

Gelclair® :: DARA BioSciences, Inc. (DARA)

As usual the biopsies came back "unspecific inflammation" so it wasn't clear from them that this is linked to Wegeners but all my doctors firmly believe it is and so the Prednisolone dose once increased could have also helped speed up the healing.

CORRECTION: THE PHOTOS I SAW IN THE CASE STUDY WERE ABOUT A WEGENER'S CASE NOT CHURG STRAUSS SO MY RHEUMATOLOGIST WAS PROBABLY RIGHT TO SWITCH THE DIAGNOSIS. HERE IS A LINK IN CASE SOMEONE IS INTERESTED IN FOLLOWING UP. The photo of the eyes and tongue ulcer matched mine exactly.

http://www.hopkinsarthritis.org/phys...ranulomatosis/

[LindseyRN]

Thank you so much for this helpful information. My Dad's initial symptom of Wegener's back in November was ulcers on his gums. They have since cleared thank goodness, but he was miserable with them. I will look into this product and mention it if they ever recur.

[debhaz22]

Hi Lindsey,
Been thinking about you guys, how's your Dad doing?
Debbie H.

[LindseyRN]

Hi Lindsey,
Been thinking about you guys, how's your Dad doing?
Debbie H.

Hey Debbie. Thank you for asking. Dad is doing okay for the most part. He still has his sinus symptoms, but all of his other symptoms (cough, headaches, scalp sensitivity, eye tearing, etc.) have been gone now for a few weeks. He is having a CT-guided biopsy tomorrow of his left apical lung nodule. He is nervous about pain and anxious about the results. We won't get the biopsy results until Monday, March 17. It will be a long 12 days of waiting. My Mom said it has been hard seeing him so worried at home.


On Friday he goes back to his rheumatologist for follow-up and lab work. This may seem kinda gross, but I had him text me pictures of a couple large balls of mucous that his nose gave birth to. I had Walgreens print them (oh yes I did!) and I'll be taking them to Dad tomorrow so he can show his rheumatologist on Friday.


How have you been, Debbie? I've been thinking about you too. I really hope you have been able to get some answers or at least getting closer to answers. Please let me know.


Lindsey