Would like to hear from people with Sjogrens

I have Sjogrens so does my only Daughter. It’s been challenging to get knowledgeable drs on board. I have small fiber nueropathy from it and Dysautonomia. I thought this was the easiest to deal with. I also have fibro lupus. Pots. I hope more research comes out. Everyone just says ur fine. They don’t understand the fatigue involved.

Your so right. It’s hard for anyone to understand the fatigue that comes with theses illnesses. Even the Doctors and family members that love us! I’m so sorry for you and your daughter. I have an ostomy and do a newsletter for Northern California groups. I wish I had the energy to do one for Sjogrens and our Autoimmune Diseases. A more personal one like we are sharing now. It’s more than FATIGUE! Thank you!

I also have this … it’s very concerning. I thought it was related to the fatigue also. But I don’t think so. I saw a new Dr. He says I have Small Fiber Neuropathy. He suggested this book. Small Nerves, Big Problems by Todd Levine MD and other Doctors.

Yes my fam is over it. Ppl need support even if they don’t fully understand.. I have a mixed bag. I need to find someone/ dr to help run the ship. I have tried but it’s putting alot of stress on an already taxed body. 🙏🏻🙏🏻 it’s not for lack of advocating for myself. My daughter asks mom are they going to help u. Pray. More research. This was never in my head.

Long term prednisone is not an ideal option and I don't think a reputable rheumatologist would force you to do that. My insurance initially wanted me to do a trial of azothioprine, which I was willing to do, but thankfully my rheumatologist talked them into rituximab as my systemic symptoms were quite disabling. It can be a fight with insurance but don't give up. You yourself can appeal their decisions, and your doctor can as well.
I've heard that the Sjogren's center at Johns Hopkins in Baltimore is good.
Another option is seeing Dr. Chadwick Johr at UPenn in Philly.
Dr. Julius Birnbaum used to be at Hopkins but moved to Pittsburgh; he is known for his expertise in neurologic complications of Sjogrens.
My small fiber neuropathy was diagnosed by my neurologist. I had an EMG done at her office, and it showed bilateral large fiber neuropathy. Since that was positive, she said that meant small fibers were also involved. If the test was negative, she would have sent me to have a skin biopsy. That specimen would've been sent for evaluation at Mayo.
There are MANY great pages of information on Sjogren's Advocate website, including neuropathy details. I think you'll find it very helpful.
Best wishes!

So true. I’m having trouble getting the specialists to send their office visits results to my primary care doctor.

@dancing1. Do your doctors use computers in their work? Is there a computer network that they all use? All patient information can be shared between doctors and patients using this system.
Can you find out if your doctor’s office uses one?

@butterfly9 I’m sorry, I just saw your post. Do you have multiple doctors for your multiple autoimmune diseases and they don’t communicate with each other? You might like to check out the Genetic and Rare Diseases website:
https://rarediseases.info.nih.gov/
They could be a great resource for you and help you find a good doctor in your area.
https://rarediseases.org/ There is also this rare diseases organization that should also be a good resource for you.
Will you let me know if you learn anything?

I’m newly diagnosed with Sjogrens, would like to meet people, communicate, if possible with patients in NYC metro area. Think I need a rheumatologist with more expertise in this, nuch sicker than expected. Saliva med not working consistently, think, nut not sure small nerve fiber(‘ involvement. Severe joint pain, coughing,, with gobs phlegm & dry hacking , vasculitis, eyes pain, visual issues ( but will see eye doc soon.… more.. my doc was great , but used it out after a year of blood work failed to diagnose. Bad flare, lip biopsy diagnosed. Was given informational leads by someone in this site, but If you live vaguely in nyc area, would like suggestions for rheumatologist familiar with Sjogrens as a systemic not just minor dry mouth, dry eyes disease. Don’t remember rules of this group either post to me here or by private message.

Yes, I will check.