1. < Autoimmune Diseases

Sjögren’s Syndrome: how do you manage the symptoms?

Posted by eileenb1022 @eileenb1022, Feb 23, 2023

Hi
I see a rheumatologist next week for sjorgens syndrome. Last summer a sinus doctor I saw mentioned it to me and recommended I see a rheumatologist. I never had heard of sjorgens and I have never been to a rheumatologist. At the time last summer. My only symptom was very dried out mouth. I developed dry eyes only a few months ago. The otc drops for dry eye stopped working unless my eyes were just getting worse so my eye Dr recommended something stronger otc. It's better. He did prescribe me restasis but unfortunately even with my insurance it was too expensive so I could not get it. But my other concern is the body/joint pain I ha e been having. It's gotten so bad tonight is the first time I have been up all night. I do have a unrelated degenerative changes near my lumberspine which is causing other embarrassing issues but my other pain started actually even way before the dry mouth. It started very soon after my gallbladder surgery last January. It started in my upper back spasms and just painful. Worse now then last 6 months went to my shoulders that's very tender, my neck. Arms. I read a article about sjorgens pain being similar to fibromyalga pain. I wondering if anyone thought it was sjorgens related being this painful or maybe something else? I have wanted imaging, preferably a mri bur been unable to get it. I'm hoping next week the rheumatologist will order something. Also last summer my sinus doctor did order bloodwork some sjorgens antibody bloodwork 5 of them and they were all normal. Although now with my symptoms progressing I wonder what bloodwork now would show. Any feedback would be greatly appreciated. Thank you.

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jerrysgirl3 | @jerrysgirl3 | Feb 26, 2023
In reply to @marryment "I get punctal plugs out in every six months or so. They do have permanent ones..." + (show)
@marryment

I get punctal plugs out in every six months or so. They do have permanent ones or they can cauterize the lower tear duct. It has helped my dry eyes and vision a lot.

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I have had a bizarre issue ever since RAI treatment after thyroidectomy and neck dissection. Every time I drink water, my eyes start pouring tears! I can't figure how the water gets up to the eyes. I have not worn makeup since 2012 because my eyes just run and run. One eye surgeon mentioned the plugs but then I realized he said "plugs" to every single person in the examining rooms as he went from one to the other. I found it weird that everyone would need the same procedure. When I said "no" he got really angry lol. Oh well.

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rexsan20 | @rexsan20 | Feb 26, 2023
In reply to @susanh824 "Sjogren’s Syndrome is generally diagnosed through a lip biopsy. It’s good that you’re going to see..." + (show)
@susanh824

Sjogren’s Syndrome is generally diagnosed through a lip biopsy. It’s good that you’re going to see a rheumatologist. I have both Sjogren’s Syndrome and fibromyalgia, as well as Exocrine Pancreatic Insufficiency. It’s hard sometimes to tell which disorder is causing which pain!

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Hey,

How did you find out about the Exocrine Pancreatic Insufficiency? Did the doctor check on the enzymes...Lipase...etc

Thank you so much!

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susanh824 | @susanh824 | Feb 26, 2023

The two definitive tests for EPI are stool fat testing and fecal elastase. They usually do an abdominal CT also.

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eileenb1022 | @eileenb1022 | Feb 27, 2023
In reply to @mothermary1 "Hi, I suffer many of the dry eye,dry mouth swallowing issues. Numerous Gastro docs but the..." + (show)
@mothermary1

Hi, I suffer many of the dry eye,dry mouth swallowing issues. Numerous Gastro docs but the eye dryness was severe causing a lot of problems. My eye doctor about a year ago did a test to see if I sleep with my eyes open and I do. Not completely, but enough to make them even more dry. It’s called nocturnal lagophthalmos. After any procedure or surgery I would always wake up with corneal erosion in both eyes. It’s so painful. So I need to paper tape my eyes when I sleep, have surgery, or a procedure that puts me to sleep. It helps but never full relieve. I recently am trying Autologous serum drops. They draw four tubes of your own blood, centrifuge and I believe remove red cells. They add a salt saline solution to your own serum. It cost 300 dollars for the blood draw at the eye doctors office and typically you get three containers of eye drops. I had to freeze two and one stays in the frig. I put four drops a day in each eye. It’s been just two weeks so I’m not going to give an opinion just yet. I was spending a lot on drops for daytime and gel for my nights. This comes out to 100 monthly and if it works I’ll be thrilled. I return in three months about one week before I run out. I waited about 45 minutes after they drew my blood to get the drops. Google it to get a better understanding. Also, I was very surprised to learn how many people sleep with their eyes open. Hope this helps you. I’ll update at end of my three months. I know that these drops are offered just about everywhere.
Best of luck,
Joanne

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Good luck Joanne,
but i dont sleep with my eyes open. my dry eyes didnt start uuntil several months ago. months after my dry mouth started. i was prescribed restasis but couldnt afford it so i just use systain 3x a day a use warm compresses 2x a day if needed.

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eileenb1022 | @eileenb1022 | Feb 27, 2023
In reply to @marryment "I get punctal plugs out in every six months or so. They do have permanent ones..." + (show)
@marryment

I get punctal plugs out in every six months or so. They do have permanent ones or they can cauterize the lower tear duct. It has helped my dry eyes and vision a lot.

Jump to this post

oh i never heard of that.

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Joanne Narna | @mothermary1 | Feb 27, 2023

I did not originally start this eye drop because I sleep with my eyes open. I’ve had a positive ANA for years and borderline Sjogrens but not elevated enough to get a diagnosis. As I age it has become much worse getting corneal abrasions to frequently. Nothing was working so my eye doctor said you might also sleep with your eyes open. He did a test, I do sleep with them partially open. I now paper tape at night which has helped a lot but far from the cure of this dryness. I’m a moth in about with new serum drops and will hope for the best. They did recommend tubes as well at 3 month visit. I also have dry moth and had swallowing issues. I had an endoscopy to widen esophagus. It has helped and be repeated when needed.
Joanne

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 27, 2023
In reply to @eileenb1022 "I will and I know I don't want to have to reschedule but he is 3..." + (show)
@eileenb1022

I will and I know I don't want to have to reschedule but he is 3 hours away as it is. I been waiting a long time for this appointment. I hate winter

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@eileenb1022 Three hours away! Wow! Now, I understand your reluctance to have to drive in the snow for 3 hours! I’ll keep my fingers crossed that the snow goes somewhere else!

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1 reply
eileenb1022 | @eileenb1022 | Feb 27, 2023
In reply to @becsbuddy "@eileenb1022 Three hours away! Wow! Now, I understand your reluctance to have to drive in the..." + (show)
@becsbuddy

@eileenb1022 Three hours away! Wow! Now, I understand your reluctance to have to drive in the snow for 3 hours! I’ll keep my fingers crossed that the snow goes somewhere else!

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I been praying the snow goes elsewhere but I don't think it's going to unfortunately. I really need to be seen but nothing I can do with mother nature

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drolker | @drolker | Feb 27, 2023

Hi Eileen! Sorry to hear about your Sjogrens symptoms.I have had Sjogrens for about 25 years.
Easier way to communicate.
Doreen

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27, 2023
In reply to @drolker "Hi Eileen! Sorry to hear about your Sjogrens symptoms.I have had Sjogrens for about 25 years...." + (show)
@drolker

Hi Eileen! Sorry to hear about your Sjogrens symptoms.I have had Sjogrens for about 25 years.
Easier way to communicate.
Doreen

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Hi Doreen, I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support and your valuable experiences having lived with Sjogren's for so long.

What tip would you offer to someone who has just been newly diagnosed with Sjogren's?

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