Sjogren’s Syndrome – Introduce yourself and meet others

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.

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.

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.

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!

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.

Hi, All,

I was tested for Sjogren's by one of my PCP's by bloodwork and she was surprised it came up negative. I have extremely dry eyes that I have an appointment for in a couple weeks to determine other options besides Xiidra, warm eye mask 4x daily, and lots of preservative free eye-drops, and night gel at night. I also have extremely dry mouth (with oral LP as well.) My question is, is there value in asking for a lip biopsy to definitively rule out Sjogren's? Is there special treatment if it is? I currently take Plaquenil for my LP from head to toe.

Thanks everyone.