MS and Sjogren's Syndrome

Yesterday I saw a rheumatologist. My neurologist in March arranged this as he felt my new symptoms weren't MS related and that I had developed a second autoimmune disease. I spent over an hour with the new doc and at the end of the appointment had 5 vials of blood drawn to test for different autoimmune diseases. Based on my symptoms, she's leaning hard toward Sjögren's syndrome. My neurologist also set up an appointment for me to see a dry eye specialist in July. I've been using restasis for over 2 years. The rheumatologist wants me to use Biotene several times a day for my dry/burning mouth (new symptom). She also wants me to take carbamazepine again every day even though my Trigeminal Neuralgia isn't too bad right now. She feels it will help with the uncomfortable dryness. Does anyone else deal with these two diseases and how do you cope? The rheumatologist also prescribed Hydroxychlorquine which is a disease modifying antirheumatic drug for my constant stiffness even though she doesn't think I have arthritis. She told me she has a lot of MS patients on it and they have a lot of relief from the pain associated with the stiffness. Is anyone else taking this med and is it working? Sorry for the long post! Thanks for any advise ahead of time!

12 Replies

  • Juleigh21, I think we've lived the same week. I'm still trying to process mine. Last week I was diagnosed with Lupus (primary), along with Sjogren's and Raynaud's. I started taking azathiaoprine last week. My neuro, rheumy and gastro hope it will help my MS, Lupus and Autoimmune liver disease.

    A year and a half ago I was put on the plaquenil (hydroxychloriquine) when the Autoimmune Hepatitis was discovered and Lupus was suspected. I've had no problems on the plaquenil. As it is an immunosuppressant, you just have to be more cautious around sick people.

    My tear ducts were plugged last month in an attempt to help with the dry eyes. I'm not sure it has helped that much, but the procedure was nothing at all. Easy. The Sjogren's has been affecting my vision, so I'm willing to do anything that helps with that. I blamed that on the MS or new glasses. It's the Sjogren's.

    I also have Hashimoto's. That was discovered 26yrs ago when testing for MS. I'm afraid some of us are magnets for Autoimmune diseases. I hope you aren't, but feel free to message me if you want to chat or ask more questions. My heart goes out to you. 💕Dawn

  • Wow... you have been a wealth of info. Thank you so much! My vision is a constant source of concern. Bright light can be crippling. I've struggled with that for many years now. Plus I have a lesion that effects my vision in my left eye! The rheumatologist is checking for lupus and RA but I don't feel I have the symptoms to support either. I hope I can tolerate the new med. I'd love to have relief from the pain associated with all this stiffness. I hope you do well on the new med!! You deal with a lot every day. Keep your chin up. You'll be in my thoughts and prayers! I don't know how to message you yet. Something else I need to learn...

  • Thank you. I always appreciate prayers. I've had my weepy moments this past week, but I know all will be ok. My docs have told me it's not uncommon to have more than one autoimmune disease. I hope you get your answers and relief from the pain. Fortunately, I don't have pain. We have to count our blessings, don't we? Yes, I've been blessed--abundantly. 💕

  • Hi Juleigh21...I've had trouble with bright light for years but so far..."only"have MS. I also have a lesion on my brain stem that apparently is what causes the nystagmus that makes my vision annoying as heck most of the time.

    There is such an overlap between the autoimmune diseases sometimes. It can be hard to sort them out.

  • Wow @Tutu! You certainly have more than your share! I admire your ability to remain positive.

  • Some days, Raingrrl. 😉

  • Up until today, my RA was also checking me for a secondary autoimmune disease, also Sjogren's Syndrome, same week I found they were also looking for a possibility of vascular disease. Unfortunately, at the moment I'm stopped in my tracks from finding out anything further.

  • Juleigh21

    I saw a rheum when I was having back pain. Labs were equivocal for lupus and he wanted me to start Plaquenil (hydroxychloroquine). I refused. Later found that my back issue required a surgical correction.

    Auto immune labs can be elevated with MS so not sure if mine are a false +

    I do get achy stiffness on occasion. But it's relieved with a few Advil and is more infrequent since I began yoga and am taking fish oil and turmeric.

    I also have TN and have taken Tegretol which can cause dry mouth and eye issues? But I guess might help with burning.

    Let us know how u r doing?

  • Sorry you are going through this, it's not easy. I started having symptoms of tingling, and numbness in my 30's, saw 3 neurologists and not one did any further forward to today. I was diagnosed in 2009 officially with MS, (nystagmus and dizziness all day, 24/7 was what brought me to doctor) in 2011came diagnosis of sjogrens and scleroderma (that's no picnic, and I do love picnics 😜) and have had raynauds for decades. I do not have RA.

    I also have burning tongue, dry eyes and mouth. I use biotene, and get zilimelts from my dentist and can't live without my biotene gel. I also found some oral lidocaine gel that when the pain is unbearable I smear some on my tongue to numb it. I've tried vitamin e, folic acid, and a few other things but nothing works.

    My hands are excruciatingly painful, just recently tried an oil exact that has medical marijuana in it. You need to get a license for it and go to a dispensary. You rub it on yours hands. I have had no luck with other marijuana products for pain and insomnia but some people swear by that.

    Hope you get the answers you seek and some relief from medications, it helps to be your own best advocate

  • Hjr4 thank you for all the info. Some days my tongue and roof of my mouth burn so much, I can't sleep! I'll talk to my dentist and try your other ideas!!

  • erash I'm hoping this new med works! The rheumatologist says it takes at least 4 months to work. I'm fighting to stay off the baclofen pump. If it can control the spasticity, it's golden in my opinion 😂. I'm moving to an area that has MS trainers. They will help me with spasticity and balance. Looking forward to trying it!

  • WOW thank you for sharing, again I don't feel alone but I'm sad everyone has so many syptoms...dry eyes, burning tingling legs feet, I have to play turn the light on off game at home and sometimes I leave stores because I get so ill of the lights.When it takes 2 hrs to get ready to get to the store...futile.Keep us in the loop how you are.Tutu we shall cry together....

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