[Tricia58]

I really need some advise...I have been struggling with gum/mouth blisters for the past month. I have been to my dermi, internist, dentist and oral surgeon. Dentist and oral surgeon wouldn't touch me....said it was very abrasive and autoimmune. I am afraid I am going to loose some teeth. The lesions especially behind my front tooth and eye tooth are like craters. They are very painful. I have upper swollen blisters and lower front and under tongue blisters. Is there anything I can do? I am on an antibotic and use topicort get on the gum. I usually take 5 mg prednisone but my dermi increased it to 20mg. I don't think that is high enough...I had lesions on my hands and I was at 40 trying to get rid of them. I am using aloe plant...skin peeled off and laying inside of plant on the sores. My teeth hurt as well. Can anyone please give me some advice? I am miserable. I just need someone to understand. I feel like I can't take this much longer. Thanks!

Tricia
SLE, Subacute cutaneous lupus, lupus profundus/pinnicalitis

 

[annada]

Hi Trisha

I do very well know how this feels, sense Oct. 2003 this has been with me. At the onset it was so bad that I had to buy a child's toothbrush just to try to brush a bit, it was a nightmare. Over time the Lychen Planus has gotten better but never has GONE, I can live with it now. Just noway to eat like I use to, anything remotely spicy, even a tad, and I regret it. Now, try everything you can get your hands and information on. Take pain meds and rinse with salt water, make sure you keep the oral hygene (sp?) especially at bedtime moreso. I still use the Biotene toothpaste and dry-mouth gell(rinse but do not spit out kind).... the mouth wash burns me mouth so beware of that even if it is the Biotene. This really does something to a person, Always aware of every tiny bite of food you put in your mouth, it's just the pitts!!!!!!!:sad: Don't be surprised if you notice the sinus irritation and peeling, the only way I know to describe it, sorry, part of the mucosal involvement with me, perhaps not with you tho, everone's different, best of luck and a speedy recovery I'm hopeing for you !

annada

 

[rwb200]

Hello Sorry to hear you are having so much of a problem with Oral Lessions.

My wife has had this off and on for many years now.

She was prescribed a steriod gel to put on it that seems to work about the best.

As was mentioned by Annada she has found that any spice at all in food will cause this.
She has also found that some items like Pepermint candy and cinnamon candy will also cause it.
High Acid foods like tomatoes and can be done in moderation but large amounts will cause her to get it.

Her Rhuemy will up the Pred when she gets it but the biggest help seems to be from the Steriod gel. It is made for external use but she was told years ago by a Oral surgion to use a small amount on it and he made her a plate to put some on when she gets them on the roof of the mouth to help keep it where she needs it.
This seems to be the biggest help for her.

Annada also mentioned mouthwash which she has found she can not use because it burns so much and causes lessions. Salt water seems to be ok.
With tooth paste she has to be careful what she uses and has found that some of the childrens tooth paste in flavors like bubble gum or some berry flavor seem to cause less problems then the mint or cinnamon that most make.
She always uses a childs tooth brush. Her dentist recommended this years ago and since they are smaller and softer she seems to get by better with them.

 

[Tricia58]

Mouth Blisters

Thanks guys for your help. I am going to try to get my doctor again. The pred or steroid gel seems to be working...I have tried the aloe plant as well. The sores are just getting worse and spreading. I am wondering if I have one on the side of my throat now or if it is just all the drainage from these. Anyway, I'm thankful to hear that there may be some relief around the corner. I don't think I can take this much long.

Tricia