Connect
← Return to Sjogren’s Syndrome – Introduce yourself and meet others
Discussion
Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)Comment receiving replies
New to the group and curious about issues secondary to Sjogren's Syndrome. I was diagnosed through blood work a few years ago in my mid 40's, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren's was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I've not seen any improvement with anything except for steroids at a high dose and oxycodone.
Meanwhile, I've been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it's secondary to the Sjogren's. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.
Is anyone else experiencing such issues?
Replies to "New to the group and curious about issues secondary to Sjogren's Syndrome. I was diagnosed through..."
@kyjeanne, I'm using Xiidra and they work well, but I almost have too much moisture now. Better than the alternative I suppose. I'm sorry to hear that the fatigue and pain are getting worse for you. Where is the majority of your pain? It sounds like we have a great deal in common regarding symptoms. I am 48 years old and not working right now, but have not applied for disability or SSDI. I'm hopeful that I can find some sort of relief and go back to work, I really love staying active. At this point, I can't function well and I simply can't imagine that it's all Sjogren's related. Do you have any neuropathy?
@melperez, I haven't been diagnosed with neuropathy yet, but I wouldn't be surprised. My one foot is pins and needles at this moment. Also, I have carpal tunnel, so I'm not sure if some of the numbness may be neuropathy. As far as my pain, my knees, behind my knees (bakers cysts), my ankle, one leg, and lately my back have been the worst places for pain. I also have Fibromyalgia, Bursitis, and Osteoarthritis, so I think a lot of pain stems from those, rather than Sjogren's.
I had severe wrist pain and initally my reg dr thought possible carpel tunnel and I said I didn't think so as I'd been typing on a computer for my job for almost 18 yrs, why would it show up now? So went with my gut of arthritis and when RA dr said I did not have rheumatoid arthritis but had sjogren's and it was a shock to me. Currently I do not have pain in my hands/wrist, but also on plaquinell and down to 15mg of predisone (to relieve interstitial lung disease caused by sjogren's). I also have a lot of eczema type spots flaring up on my hands and arms and thighs right now that I put vanicream on and after a couple of days subsides. Sorry I got off topic. I need to go back and read this forum from the start as I have lots of questions about sjogren's.
So interesting. I had wrist pain, joint pain in my hands and the Dr. said it was probably carpel tunnel. Blood tests showed Sjogren's which was a total surprise to me as well. I have some sort of eczema type of spots forming on my hands, forearms and lower legs. They almost feel like plaques if that makes sense? I was allergic to Plaquenill, so tried Imuran for 2 years and towards the end of that 2 years, my symptoms really were out of control. I'm on Methotrexate, but so far it's not helping.
@kyjeanne, thank you for sharing. Isn't it frustrating to try and determine what is Sjogren's and what is secondary? Are you checking into the possibility of neuropathy? My Neurologist did nerve tests and they came out normal, but the punch biopsies were all positive. You may need to have additional testing.
@melperez1223, I went to a Neurologist in August, but he was more concerned about some strange sudden headaches I was getting, which have now gone away. All he did was test me with a plastic hammer. I wasn't too impressed. I'll probably find a new Neurologist at some point.
Connect
@melperez1223, I was diagnosed with Primary Sjogren's 5 years ago but the dry eyes, mouth, and skin existed for 10-15 years prior. The fatigue and pain are progressively worse. My sense of smell comes and goes. I had to get hearing aids 3 years ago. I have Hashimotos, Restless Leg, Osteoarthritis, Gerd, Diverticulitis, Osteoporosis, trouble sleeping, etc. I've had my Esophagus dilated twice, due to trouble swallowing. I also get chest pains, but other than an irregular heartbeat (which is under control by meds), my heart is fine. I take Pantaprozole for the Gerd, which seems to be the cause of heart pains. I'm on Plaquenil, Methotrexate, subscribed Xiidra eyedrops (waiting for insurance approval), and OTC meds for Sjogren's, in addition to several other medications for other things. I had to quit work 1 1/2 years ago, so I filed for SSDI, which I just received! Hallelujah! I'm sure that's more than you asked for, but I wasn't sure what you were looking for. I'll try to answer questions if I can. Also, on the foundation website, there is a new support network smart patients, and several on Facebook, which have really been a help to me.