Hey everyone, I was looking for some insight about some symptoms I’ve been experiencing. I have SLE and I know Sjogren’s and Lupus commonly occur together. Autoimmune diseases run in my family like crazy.
Anyway, I’ve had chronic dry mouth, and dryness in my “intimate region” as well. And weirdly, for years I never cried chopping onions. I used to when I was younger, and then it stopped.
Well recently I’ve been on a very heavy dose of corticosteroids to treat the Lupus. I was making dinner, started to chop an onion, and suddenly, my eyes poured with tears. It was very strange. I tried to google this scenario and couldn’t find a specific answer.
The dry mouth has practically destroyed my teeth. It’s very embarrassing.
Also, has anyone ever had strange mouth/face pain when eating, especially something that tastes good/incites your mouth to water? Not a burning, but a wave of general pain that fades after a minute?
Does any of this sound familiar to anyone? I don’t have insurance so seeing a doctor is really difficult. I can’t really afford to ask for testing for things like this unless I’m really sure there’s a problem.
Welcome! It all sounds familiar to me! Glad you can tear up again. I know it helps the Lupus and the Sjogren's, but please just be careful of the Prednisone, it can really thin out your bones.
I use preservative free OTC lubricant eye drops, Bioteen toothpaste and mouthwash (for dry mouth), and just picked up a script for Plaquinil to mail in to be filled. I'm hoping that's a hit, rather than a miss.
I'm very sorry that you are without insurance, that must be tough going. Please take good care of yourself! We're glad to have you here!
I would love something other than prednisone (Plaquenil for example) but it’s just hard to get anything specialized like that from local clinics and ER’s. they tell me to see my rheumy and I can’t afford it right now.
Last year I was technically "diagnosed" with Lupus SLE, kidney disease and SSJ.
I have had the pain you describe when sometimes eating. I was told it is from your salivary gland which appears to be SSJ related but am not 100%.
I struggled for the past 30 yrs with multiple symptoms/illnesses from each disease and went from dr to dr only to be undiagnosed, however, I was treated for each separately. Noone ever connected the dots til now. So bittersweet.
I took prednisone last year. Miracle drug--pain GONE but BP went thru the roof so they switched me to plaquenil. I tolerate that but not as effective. I take cellcept for the lupus to stabilize the lupus and slow the kidney disease. Not sure yet if working.
Does anyone here know is cellcept also helps SSJ or is there a separate med that will help stabilize. My symptoms are being treated separately but not all and not all are managed very well. I believe I could be better. Every day I struggle with something new. does it ever take a break???? I know my SSJ is out of control.
I want to find a doc that specializes in SSJ and lupus. My doc only does lupus and told me to contact pcp for pain meds. Appears we all have these problems. ho hum.
Prednisone does have some unsavory side effects during my last course I had terrible insomnia.
maria said:
Hi Rodent Queen,
Last year I was technically "diagnosed" with Lupus SLE, kidney disease and SSJ.
I have had the pain you describe when sometimes eating. I was told it is from your salivary gland which appears to be SSJ related but am not 100%.
I struggled for the past 30 yrs with multiple symptoms/illnesses from each disease and went from dr to dr only to be undiagnosed, however, I was treated for each separately. Noone ever connected the dots til now. So bittersweet.
I took prednisone last year. Miracle drug--pain GONE but BP went thru the roof so they switched me to plaquenil. I tolerate that but not as effective. I take cellcept for the lupus to stabilize the lupus and slow the kidney disease. Not sure yet if working.
Does anyone here know is cellcept also helps SSJ or is there a separate med that will help stabilize. My symptoms are being treated separately but not all and not all are managed very well. I believe I could be better. Every day I struggle with something new. does it ever take a break???? I know my SSJ is out of control.
I want to find a doc that specializes in SSJ and lupus. My doc only does lupus and told me to contact pcp for pain meds. Appears we all have these problems. ho hum.
they tell me to see my rheumy and I can’t afford it right now.
during my last course I had terrible insomnia.