Dry mouth for 8 months! Could it be Sjogrens?

Ok so I may not be 100% helpful but I can try to help through my personal situation. After I had my daughter last year I developed this awful rash on my face and eyelids that's red, dry and scaly. Absolutely nothing helped. But having a baby and breastfeeding I just kept putting it off trying new things hoping it would go away before seeing a doctor. Then I started having dry eyes that always felt like I had sand in it and would pull out mucus all the time (gross sorry). Finally after 7 months of my face getting worse and also having a weird rash in patches all over my body that were like little ITCHY blisters I finally saw a dermatologist and they had no clue, had never seen anything like it. Sent off biopsies and blood tests. Nothing came back except my levels that indicated an immune disease was present but they didn't know what kind. They sent me to a rheumatologist, she did more blood work twice and finally the only thing that came back was early signs of Sjogrens syndrome. I let her know I've never had dry mouth, my eyes getting dry comes and goes and is never consistent and my main problem is these rashes that no one can seem to know what they are. She let me know Sjögren's have flare ups that stay for days to months at a time, clear up then come back. You don't have to have every symptom SS is known for and you can have other symptoms that aren't typically known. All the rheumatologist has done for me was put me on plaquenill (s?) and give me a steroid cream for my rash. It takes 3 months for plaquenill to work but I feel like I'm starting to tell a little bit of a differences after a month. I hope this helped. I've learned that not many people or doctors seem to know much about SS and don't seem to take it super serious unfortunately. Good luck to you though!! I hope you find better doctors than I have!! 

I have been suffering for 7 month almost 8.  Finally I went to 9 diff DR's Rheumo to Oral surgeon they all said SS but did not show in  blood work.  This dry mouth is bad with eyes ears and nose even lungs.  They treat each symptom with mouth wash to eye drops The Dr told me that is it.  There is no med for SS Only the symptom.  I feel bad for you because I am getting tired of being so tired I hate getting dress

I had dry eyes and dry mouth for several years before I had out treated because I had never heard of Sjogren's syndrome. Mine came on so gradually I thought it was just part of getting old. And then someone in one of my other groups mentioned. Since that time I did the blood test a couple of different times and I even had the lip biopsy. Lip biopsies are typically done by ear nose and throat doctor or an oral surgeon. Mine came back inconclusive! I've never heard of anyone having an inconclusive test and after talking to the laboratory I don't think they knew what they were doing. All that being said I decided that I didn't care if I had a positive test or not. I had the damn symptoms and I wanted the symptoms to be controlled. After all there is no cure for Sjogren's, there isn't even a particular medicine one can take to control Sjogren's. If you have it the only real thing you can do is control the symptoms. So that is where I am at now. There are two kinds of medication typically prescribed for dry mouth. I tried one and it made me nauseous so I'm on the other one. So whether you have tests done and weather they are positive or negative you have dry mouth so ask your doctor to treat it.

(You would have white lines on your inner cheeks)

I was told by a GP, years ago, that I had Sjögren's Syndrome because of my dry eyes.  At that time, there was no specific test.  Fast forward to now & I still have very dry eyes & am being well cared for, I am lucky, I know.  I also have an autoimmune disease called Mucous Membrane Pemphigoid - Ksmith, I wonder whether your itchy rash is anything to do with Pemphigoid, there is one that is associated with pregnancy, called  Pemphigoid gestationis.  I will send you a link, just in case!

I am also under an Oral Specialist & see hygienists in the Dental Hospital, where a tutor asked me whether my dry mouth caused problems.  I subsequently asked my GP & she arranged for blood tests, some of which were positive for SS.  I am now on a waiting list to see a Rheumatologist who also has an interest in SS & Dermatology, so the best of all worlds!

I remember reading that you shouldn't take Pilocarpine with high blood pressure, which I also have.  In my case, there appear only to be 2 drugs which deal with my conditions,  Mycophenolate Mofetil - brand name CellCept

and Rituximab which is given by infusion.  I am currently on Mycophenolate.

If you do have SS Emily, even just ?SS,  you need to be under a specialist who understands the condition.

Hiya Emily, really feeling for you..I’ve SS fir 30 odd years and it’s just amazing at how many various symptoms it can bring up..

to answer your questions: 

Yes

I have never ever been to those specialists, a Rhumotologist  seems to be the doctor who diagnoses nearly all of us..

I go into a  remission from Sorgrens, it varies for the  tines in and out, I usually now have a remission for few months, then it’ll hit me again, comes back with a vengeance 

After 1 week to 4 it will go back into remission..I had a remission once for 7 months...

but it the most important thing is to get diagnosed. Many people have spent a lot of monety with wrong specialists, if you are diagnosed, then if necessary the Rhumatologist will refer you to the relevant specialists, re: saliva, dry eyes and dry ears..there is a heap of over the counter meds that you can take..that’s all I ever use....hope it helps..your on a very informative blog...filled with empathetic people here too. hugs from over the seas..be blessed Emily and have a lovely day😍💐💐