1. < Autoimmune Diseases

Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

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lucyhipp | @lucyhipp | Dec 28, 2022
In reply to @mom2204 "Hope for an outcome that give you some concrete info. Half of the pain/distress of the..." + (show)
@mom2204

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.

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Thank you that is my treatment plan from speech therapy and I have to do swallowing exercises to strengthen my tongue! I also use hot tea at meals’

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jip499 | @jip499 | Dec 28, 2022
In reply to @lucyhipp "I am as physical as possible but going swimming is not going to happen. I don’t..." + (show)
@lucyhipp

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!

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Lucy — I am sorry you have those symptoms. I have had Sjögren’s for 30 years and have gotten help from good informed doctors. You can get better after a proper diagnosis.

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mom2204 | @mom2204 | Dec 28, 2022

I would never want to critique you as we are both in this struggle. I was gratified to see you are in the US. Here in Canada we cannot see a doctor let alone a specialist. Getting out for any exercise is a challenge due to pain and stiffness but the after effects of exercise is sometimes worse. No support here. Thank you for any useable techniques that have worked for you.

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bustrbrwn22 | @bustrbrwn22 | Dec 28, 2022

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.

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1 reply
susanh824 | @susanh824 | Dec 28, 2022
In reply to @lucyhipp "I have it but had negative antibodies and my rheumatologist could care less about me because..." + (show)
@lucyhipp

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.

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The esophageal stretching will probably help so much! It’s an easy procedure done during an EGD(scope.)

However, this is probably not caused by Sjogren’s. The lip biopsy should give you the answer.

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susanh824 | @susanh824 | Dec 28, 2022
In reply to @bustrbrwn22 "Hi, All, I was tested for Sjogren's by one of my PCP's by bloodwork and she..." + (show)
@bustrbrwn22

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.

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Yes, I would ask for the lip biopsy. That is the definitive text.

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1 reply
rexsan20 | @rexsan20 | Dec 30, 2022

does anyone ever blisters? What is the best medicine for that?

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rexsan20 | @rexsan20 | Dec 30, 2022

For severe dry eyes has anyone done this IPL treatments?

REPLY
rexsan20 | @rexsan20 | Dec 31, 2022
In reply to @lucyhipp "I am as physical as possible but going swimming is not going to happen. I don’t..." + (show)
@lucyhipp

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!

Jump to this post

For pain I take Tramadol is that okay?

REPLY
rexsan20 | @rexsan20 | Dec 31, 2022

I am considering g to do IPL for my dry eyes? Anyone done this ?

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