blisters on the roof of the mouth

[Reanne]

I was wondering if anyone else gets these?  Most recently I had them on about 1/4 of the roof of my mouth.  At the same time, the glands under my tongue were burning/stinging.  Then I developed a sore on the bottom of my tongue.  All this was on the right side of my mouth.   
reanne

[Scottietottie]

Hi 

I suggest you get your dentist to check this out. I am not medical, so I do not know everything that can cause blisters but I do know that Lichen Planus (another AI condition, not necessarily linked to SjS)  is a possibility. I have been being treated for it recently, which just involves a steroid mouth wash. I would definitely get it checked though.

Take care - Scottie 

[Reanne]

Thanks Scottie, I will look into that.

[mshistory]

Hi Reanne,

I see that one of your diagnoses is MCTD; (usually) painless blisters on the roof of your mouth are one of the symptoms of lupus. If you can get photos of them (I know, easier said than done!) try to get those and show them to your rheumy too.

[4Kids]

I get these occasionally. Then they erupt and go into sores which is some sort of weird AI/Sjs thing, imo. Mouth ulcers.  Saw the rheumy with some bad ones and they were just a part of the stuff that went down after the horrible flare I had in April of 2011. Actually they started after my mother left following losing her battle with cancer. I assumed they were cold sores/herpes simplex at the time, but they persisted until I got liquid diflucan.  Haven't had them back since.

I hope you find some relief!

[Tivia]

I get them but its more like the type of blister when you eat something too hot. I think its because mouth is so dry and abrasion from food hard candy etc can cause mine. I get a lot of odd things, like blood blisters in my mouth and I didnt hurt anything, and they are not sore. Just pop up then disappear

[irish]

When we get that many blisters it behooves us to get medical attention. We can have blisters with any autoimmune disease and often a diagnosis of lupus, sjogrens, pemphigoid or pemphigus help head the search in the correct direction. Often biopsies are necessary to prove diagnosis. Often the eyes will be involved when the oral blisters are kicking up. Oral blisters are really nasty.

My little grandson who is on gluten free diet since age 4 had 5 ulcers on his tongue. His mom emailed me pictures and said that they had started as blisters that justs grew and got worse. A trip to the pediatrician resulted in the gluten free diet. Grandson's dad (my son) and grandpa both have celiac disease. Pediatrician said too invasive and spendy to do all the testing on a 4 yr old when there was such an extensive autoimmune history so hence the gluten free diet. The boy's mouth, stomach pain and behavioral issues improved when he got the the GF diet.

We can just never be sure what diagnosis the doctors are looking for or what the doctors are thinking. The main thing is that autoimmune disease overlaps and it really doesn't matter what the diagnosis is. Getting treatment is the main issue. Good luck. Irish

[mshistory]

We can just never be sure what diagnosis the doctors are looking for or what the doctors are thinking. The main thing is that autoimmune disease overlaps and it really doesn't matter what the diagnosis is. Getting treatment is the main issue.

There are some overlapping features among autoimmune diseases but getting an accurate diagnosis is absolutely important. Firstly, there are some issues with some diseases that doctors have to monitor more closely than others; secondly, treatment options do vary a bit depending on not only symptoms, which are important to treat of course, but also data that indicates certain treatments work better for certain illnesses and may not even be an option for other diseases (Enbrel is FDA approved for types of erosive arthritis, Benlysta is approved for systemic lupus, etc. Based on my diagnosis AND symptoms, I am an excellent candidate for Benlysta but not for Enbrel); thirdly, the right diagnosis is VERY important when dealing with doctors other than your own rheumatologist and regular doctors, particularly emergency medical personnel.

As an example, if I were to go to the ER, as I have had in the past, and tell them I had primary Sjogren's presenting with the symptoms I had, (1) it wouldn't have made much sense to the ER and hospital doctors at all, and (2) it would have an adverse affect on the treatment I received from hospital staff. Knowing I had SLE gave emergency care doctors immediate knowledge of the disease I had and a better understanding of the types of complications they should be looking for.

Additionally, presenting at Urgent Care with less obvious symptoms of a SLE exacerbation, such as pleurisy and bronchitis, and telling the urgent care doctor my diagnosis at that point was primary Sjogren's got me those looks of "Really? You have Sjogren's and you're here running a fever and complaining of pleurisy?" So I inevitably would rattle off my labs and why my rheumatologist was leaning toward a Sjogren's diagnosis, and the urgent care doctors would dismiss it and say "Oh, well you could have anything." Maybe you don't think it's important to have a diagnosis that describes your symptoms better and makes sense to other medical professionals so that better treatment is received, but I certainly do.

Getting treatment is important, but I don't understand why I keep seeing these posts about how these diseases are all so similar so getting a "proper diagnosis" doesn't matter. MS is very different than Hashimoto's; celiac disease is very different than Sjogren's; lupus is very different than scleroderma. Getting the right diagnosis or diagnoses matters. Think of all the people on this forum alone who fought so long to get a diagnosis - I can't imagine it doesn't matter to them.

[mshistory]

Just a link because it provides a lot of great information about overlap diseases and the importance of distinguishing what disease process is causing particular symptoms so doctors can treat it properly:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroom.aspx?articleid=4655&zoneid=8

[Skylar]

Hi 

I suggest you get your dentist to check this out. I am not medical, so I do not know everything that can cause blisters but I do know that Lichen Planus (another AI condition, not necessarily linked to SjS)  is a possibility. I have been being treated for it recently, which just involves a steroid mouth wash. I would definitely get it checked though.

Take care - Scottie 

I suggest you also have a dermatologist look at your mouth - my dermatologist diagnosed my Lichen Planus after my dentist and endodentist threw their hands up and the air and said they didn't know what to do or how to help and sent me to the rheumatologist.

[Reanne]

thanks everyone!  what a lot of good information!  I go to the neurologist on Wednesday, by then I think my mouth will be healed.  I don't know if I could get a picture or not.  Since my ana had dropped to 1:40, the rheumatologist at Scott & White didn't think I have lupus.  There was lots of blood work done, but I can't go to the scheduled appointment.  I have asked for the nurse to call me, but so far I haven't heard back.  My most recent rheumy appt with my regular rheumy changed my diagnosis to rheumatoid arthritis, sicca, fibro, and a few more things.  I received a script for Cymbalta for the muscle pain, but haven't taken it on a regular basis. 

thanks again for the replies.  It'll take me a bit to "soak" up and look up the things mentioned.

[irish]

I agree with diagnosis is important, but sometimes with some symptoms the immediate need is pain control, anti-inflammatories, etc until a work up can be done by another doc or with our current doc.

I know that I suffered big time with my bullous pemphigoid over the years and the last time I had a 13 cm bullae and a arm the size of a small log with the redness and swelling I was so miserable. I was in ER, Internist, etc and no one even gave me a pain pill to tide me over til I got in to see a dermatopathologist 2 weeks down the road. There are just times when some common sense treatment to relieve symptoms and our misery is what we need.

WHen these docs in ER don't know what they are dealing with they can be very good at doing nothing and sending you on your way. It has made me quite upset many times because I have felt that they were not addressing the issues that I came in with. Diagnosing is wonderful, but when we are suffering something needs to be done to at least alleviate some of our misery until we can get diagnosed. This is where I was coming from. It does take a good doc to do the right tests and use his brain to come up with a diagnosis.

Any time some one has skin or oral lesions it is recommended that a dermatologist be seen. I have had some not so good dermatologists myself and finally latched onto a dermatopathologist who is awesome. I hope to keep him til I die. Also, ENT can often diagnose the oral lesions and biopsy. Good luck. Irish

[Linda196]

I agree that having a specific diagnosis allows some fine tuning of treatment, especially in an emergent situation, but another aspect of specific vs general diagnosis (SjS/SLE/MS or autoimmune dysfunction) is that, if I were to tell an ER doc that I have "some autoimmune disease they haven't pinned down yet" it give him a starting point with my symptoms, and he can treat the symptoms in a manner most effective to the most likely AI, but still keep an open mind that my symptoms may be from any of the AI group. For example, if I complain of neuropathic pain, and tell him I have SjS, he may or may not recognise the significance; but with the same complaint if I say I have "some kind of autoimmune disease", he can start with MS, and SLE which would be more common, and treat the symptom, not the disease, as Irish said.

I'm at the point now that (at my rheumy's suggestion) I would tell an ER doc that I have immune dysfunction and could present as SjS, SLE, MS or RA.....his choice, and to please bear in mind that with my AI history, I could suddenly present with any AI. My emergent ID also contains those comments, slightly better worded (It says "multiple broad range AI diseases with possible newly developing undiagnosed conditions"), in the event of my being unconscious or unresponsive.

[mshistory]

I agree with diagnosis is important, but sometimes with some symptoms the immediate need is pain control, anti-inflammatories, etc until a work up can be done by another doc or with our current doc.

I know that I suffered big time with my bullous pemphigoid over the years and the last time I had a 13 cm bullae and a arm the size of a small log with the redness and swelling I was so miserable. I was in ER, Internist, etc and no one even gave me a pain pill to tide me over til I got in to see a dermatopathologist 2 weeks down the road. There are just times when some common sense treatment to relieve symptoms and our misery is what we need.

WHen these docs in ER don't know what they are dealing with they can be very good at doing nothing and sending you on your way. It has made me quite upset many times because I have felt that they were not addressing the issues that I came in with. Diagnosing is wonderful, but when we are suffering something needs to be done to at least alleviate some of our misery until we can get diagnosed. This is where I was coming from. It does take a good doc to do the right tests and use his brain to come up with a diagnosis.

Any time some one has skin or oral lesions it is recommended that a dermatologist be seen. I have had some not so good dermatologists myself and finally latched onto a dermatopathologist who is awesome. I hope to keep him til I die. Also, ENT can often diagnose the oral lesions and biopsy. Good luck. Irish

I see - that makes sense. I also think that ties into one of the big issues we've complained about so many times just that I've seen over the past two years that I've been a member here. Many doctors just don't take Sjogren's as seriously as they should or understand all of the complications it can cause.

You're right - sometimes we need immediate pain relief but doctors are reluctant to treat because they don't know what they're dealing with. I can't believe you showed up in the ER in pain and they wouldn't even provide you with pain relief. I thought that was one of the goals of ER treatment - making sure the patient is stable and the pain is controllable so they can be sent home and if that's not possible in triage, then admit them to a hospital. That's what happened to me in March - I showed up in such excruciating pain and was given fairly prompt attention for it being an ER. I was given pain medication pretty quickly too, and was admitted later that day. I spent two days in the hospital. The second time I went to the ER, I was treated in triage and immediately given pain relief again.

I think that's why having a diagnosis that doctors understand causes horrible pain can be helpful to us patients though - no one ever batted an eye with my contorted expressions and looking so awfully sick like a cancer patient (I'm nearly bald and terribly skinny and was crippled by pain). They were just like, yep, lupus sucks. Without that diagnosis, they may have looked at me and wondered, "Is this woman some sort of drug addict!?" I guess the rashes covering me from head to toe may have been been a big clue though.

Linda, I know this is off topic from the original post, so I apologize, but it is hopefully uncommon that a person has to deal with so many diseases! My gosh, my biggest one right now is SLE and it alone is so terribly difficult to live with. I do have Sjogren's as well, and my rheumatologist is sure I have fibromyalgia but I don't know what to do with that. We do all have different needs. I was unable to communicate with my last horrific flare, so I needed the tidy short diagnosis to give the doctors a starting point in their treatment; I just hope most of us don't have to deal with the many AI diseases you do, and I am sorry you have so many to struggle with.

[Linda196]

Just to clarify, I haven't been diagnosed with all those diseases! I have a very understanding Rheumy who suggests that AIs are a spectrum disorder, and I swing along the spectrum from MS through SjS to SLE, and the RA symptoms are more from SjS related inflammatory arthritis, which could also result from my Sarcoidosis, so RA is simpler.

I've only been specifically and officially  diagnosed with Sarcoidosis, SjS, Hashi, IBD, deQueverain's synovitis, Raynauds, polyArthritis, and fibromyalgia. The other Dx I have are more from my doctor saying "I'm pretty sure you have dermatomyalgia but you don't need to go through a biopsy since we're treating it already" or " a lot of your blood work supports SLE but a firm diagnosis wouldn't change management and would just be one more label" and "your arthritis could be either RA or PA but since the serum markers aren't strong, and it won't change treatment..." and so on.

The good news is, if my symptoms stop responding to my current treatment, he can use the appropriate "not yet DX" disease to change to another treatment without having to fight the "off label" battle.