Sjogren’s Syndrome – Introduce yourself and meet others

I see my rheumetologist every 6 months, and have a lot of bloodwork done before.

Yes, I was diagnosed when I was 31. I’m 64 now. I’m guessing your doctor has you on Plaquenil, as that is what usually is prescribed.

Are you seeing a rheumatologist? I used to have terrible joint pain in my knees and elbows. Injections into the joints help.

I also have fibromyalgia, so sometimes it is hard to figure out which disease is causing which symptom. I sleep in a recliner, because a bed is too painful for me. Right now, I am fighting an autoimmune urticaria (rash) that I’ve had for 9 months.

Take exceptionally good care of your teeth. I did the best I could, and spent thousands of dollars on mine. But now I wear dentures.

I have it but had negative antibodies and my rheumatologist could care less about me because I’m suffering and choking on my food probably losing weight and in pain every where! Thursday I get a lip biopsy done by ENT. He may also stretch my esophagus. My name is Lucy.

Sounds like you had Hashimoto’s thyroiditis and burned your thyroid out. The progression of your TSH suggests that. Now you are hypothyroid. Not the end of the world . Have you heard of CREST. Sjogrens is only a part of the picture, hence SYNDROME. You may only have one of the pontentia Five but with your pain ,I would think there may be others going on, like joint inflammation. You need a good rheumatologist who will look at all of your sx. I personally would get off “pain killers”. The alternative acetaminophen, Tylenol. I knit till my thumbs scream at me. If you can walk or swim….get as physical as you can comfortably do. I am a nurse as well 1967 class. But I still cannot know your whole story.

Yes and it is not pleasant disease process Mine localized to mouth and tooth loss related to severe dry mouth gum recession.
The most helpful is the usual dry mouth over the counter lozenges ( oxy melts) and a bit of coconut oil at interval during the night.
My recipe for “Mary’s magic mouth wash” counters the chronic yeast/ inflammation caused by lack of saliva. Recipe as follows….60 ml Nystatin, 180 ml Benadryl elixir,60 mg hydrocortisone, and 1500 mg tetracycline……1/4 to 1/2 tsp orally …. swish and hold and spit. Sometimes it will last all night long.

The problem with your esophagus is esophageal dysmotility. Believe me it is a real problem with Sjogren’s as Sjogrens is only one symptom of a possible five tiered syndrome CREST. C=. Calcinosis R = Raynauds E = esophageal dysmotility and you know the symptoms all too well S = syndactyly T= telectasia. Much of this is OLD INFO as the CREST is now known as limited scleroderma. I am going to look that one up and get re-educated.

I have problems swallowing and I am not getting any treatment at all. I am getting a lip biopsy on Thursday and now I know why my ENT told me he needed to go down my nose and look at my esophagus. Thank goodness that I am going to sleep. I choke on many foods.

Hope for an outcome that give you some concrete info. Half of the pain/distress of the disease is not knowing. Small bites of food and as much as I like chicken breasts and bread rolls, they both do not go down smoothly for me. You may zero in on what is the worst food for you.
Frequent small feedings might help without the noxious foods once you get them identified. Best wishes for useable news.

Right now I’m eating soup with small pieces of chicken in it! I dip toast in tea in the AM.

I am as physical as possible but going swimming is not going to happen. I don’t have a car and depend on others for appointments. I also have calcific tendonosis in my R shoulder. It causes neuropathy and awful pain. Tylenol would not touch it. I tried it for 4 months. I was sent to pain management and take less than I am prescribed. The entire picture is a mess. I was never a candidate for Plaquenil but was given it for 4 months and I then I was told you have no other treatment options. Srogens foundation says otherwise so I went to U of Pa in a nearby State. She is insisting on a lip biopsy and my ENT who knows my hx of Gastroparesis and gastritis is going down to see my esophagus while I’m asleep tomorrow. Please don’t criticize me because I’ve been through hell with no treatment since August!