Sjogren’s Syndrome – Introduce yourself and meet others

Don’t know if this was mentioned before, but Sjogren’s disease is always systemic.
I was diagnosed with RA over 15 years, but it wasn’t treated very effectively.
Five years ago my current, very efficient, rheumatologist diagnosed Sjogren’s and lupus.
I now have neurological problems, lung disease, and GI problems, along with the usual dry eyes and dry mouth.
These possibly could have been avoided if diagnosed earlier.
Can be difficult to find good rheumatologists, but early diagnosis is important.

@camasw These 2 organizations keep a list of rheumatologists who specialize in autoimmune diseases. You can ask for recommendations based on where you live.
GARD. Genetic and rare diseases organization
https://rarediseases.info.nih.gov/
NORD. National Organization for Rare Diseases
https://rarediseases.org/
Be sure to let me know if the organizations are helpful for you.

I've had Sjogrens Disease since I was 31 and I'm 68 now. I have posted this before: Wishing I had stock in Biotene products! They all work for me; mouthwash several times a day and always after I brush my teeth, I use the gel for mouth sores and Biotene spray anytime I wake up at night. Biotene gum is good and I use that when I'm out. So I always have some Biotene product on hand and it is pricey.

My Refresh eye drops are also pricey but I have been on Restasis RX eye drops for 2 years and this actually repaired scratches on my cornea. I'm less light sensitive and use less of the Refresh.

I took Plaqenil in the past, 1 tab and it didn't seem to have any effect. My current rheumatologist suggested I try 2 tabs and it has made a real difference for me with dry eyes and mouth. I don't have any side effects from it although I see here that many people do. I think I've taken so much medication and been through so much for over 30 years, that maybe I'm immune now!?

There's something I don't see listed by others yet; Brain fog is a part of my life. It waxes and wanes but is disabling. Nothing has helped that except rest.

I have taken a one hour nap every day for all these years.

I find steroids and pain pills. It works for me. What i have left. I don't want to hurt.

@madison2947
I was just dx with Sjogrens disease this June after ss-A positive. I was being treated with Jascayd for ILD now that is on hold and now taking the cellceft with my face having breakouts. This must be from the cellceft.

@a43046 if you have a rash you need to let the doctor know, it could be temporary or something more serious.

Good morning. I also have Sj and was diagnosed about 18 months ago. It is mostly affecting my eyes. I am on Tryptr which is helping tremendously but it does take time to get the full affect.

I have a lot of pain throughout my body!!!! A lot!!!! My rheumo is not convinced it is from Sj. I went to an orthopedic and he said I have legit structural issues in my neck and hip but that wouldn't explain the pain in other parts of my body. For now, I have decided to do PT one body part at a time to avoid taking the Sj meds like Plaquenil.

Also check out the Sjogrens Foundation. They have a ton of resources and are doing amazing advocacy for us.

Thanks for starting the post.

@jw9 thanks. Your observations are helpful. I was diagnosed about a year ago. I totally agree about Biotene! I will try the mouthwash. Do you have dental issues? Also started Restasis this year I think I am using less of the Refresh drops now.

@eloise999
I have had Sjogrens since I was 31 and at 34 I had Stage II parotid gland cancer. So no salivary gland on that side, then radiation treatments affected my head and neck. But my radiation oncologist told me to use Phos Flur rinse, once at night and once in the morning. He said, You'll always have to do this. And I did, because I met all these people in the waiting room telling me, You'll lose all your teeth.

Phos Flur remains my favorite, it has the highest fluoride percentage. But it was hard to find. I have used ACT without alcohol of course, and now use Tom's with Fluoride which is mild on my mouth.

During Covid I wasn't able to get my twice a year dental cleanings. In fact I missed a year and a half. I don't know if it was just going to happen or that affected my mouth but I was shocked to find out I had periodontal disease. (Great, another disease?!)

So now I have to pay for periodontal cleanings and I go every 4 months. I've seen 2 dentists in the last 5 years. They both made grim pronouncements. But I keep to that plan, and as I described my homecare, I last had a cavity in 2003!! I really feel confident that I'm taking good care of my teeth.

@johnwburns Does it ever get better? I’ve had dry eyes and mouth for years and now the dry skin has happened and brain fog. I have overall body pain and have had for years that they now say is autoimmune inflammatory disease. I feel like it will never get better. My first appt with a dr at Mayo is nov 16