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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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Oct 1, 2023
In reply to @ebinca "I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis..." + (show)
@ebinca

I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis I’ve had was self funded through Mayo. Sjögrens. As Mayo is in a different state, they would not offer treatments other than Cevimeline. I’ve done as much research as possible and am trying to control the immense fatigue that goes with Sjögrens myself. I found access to LDN, Metaformin, NAD+ injections, and hormones through docs in Florida (I’m in NV). Prednisone and hydroxychloroquin from Mexico. Why are doctors so hesitant to help? Have any of you been able to communicate the depth of issues that come with Sjögrens to your doctors well enough that they understand it can be debilitating? I recently caught my first case of covid because I’m a teacher. A teacher with a compromised immune system is frightened. It’s been almost 2 months and I’m still haven’t fully recovered, but I’m not dying so as far as docs are concerned , all is well.

How do you all manage the fatigue part of Sjögrens? Do your doctors understand Sjögrens? Have they prescribed anything that actually helps? I do have Xiidra, but the dryness are the least of my concerns.

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@ebinca
Welcome to Connect! We do have quite a few members that have been posting about Sjogren’s. I hope someone will get back to you with personal experiences. I have dealt with other autoimmune illness and part of that illness was debilitating fatigue- on and off, depending on the activity of the illness. I’m adding a link to an NIH article about the fatigue- there is a lot of scientific discussion but there is quite a bit of information. Are you able to travel to one of the Mayo Clinic campuses?https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8267792/

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 1, 2023
In reply to @ebinca "I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis..." + (show)
@ebinca

I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis I’ve had was self funded through Mayo. Sjögrens. As Mayo is in a different state, they would not offer treatments other than Cevimeline. I’ve done as much research as possible and am trying to control the immense fatigue that goes with Sjögrens myself. I found access to LDN, Metaformin, NAD+ injections, and hormones through docs in Florida (I’m in NV). Prednisone and hydroxychloroquin from Mexico. Why are doctors so hesitant to help? Have any of you been able to communicate the depth of issues that come with Sjögrens to your doctors well enough that they understand it can be debilitating? I recently caught my first case of covid because I’m a teacher. A teacher with a compromised immune system is frightened. It’s been almost 2 months and I’m still haven’t fully recovered, but I’m not dying so as far as docs are concerned , all is well.

How do you all manage the fatigue part of Sjögrens? Do your doctors understand Sjögrens? Have they prescribed anything that actually helps? I do have Xiidra, but the dryness are the least of my concerns.

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@ebinca Welcome to Mayo Clinic Connect! I’m sorry you’re having problems with sjogrens and that doctors are scarce in your area. Someone recommended this website as an excellent resource.
https://www.sjogrensadvocate.com/
The National Organization for RareDiseases and the Genetic and Rare Diseases organization should be able to help you find a doctor. Phone numbers are on their websites.
https://rarediseases.info.nih.gov/contact
Please let me know if they are able to help.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2023
In reply to @ebinca "I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis..." + (show)
@ebinca

I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis I’ve had was self funded through Mayo. Sjögrens. As Mayo is in a different state, they would not offer treatments other than Cevimeline. I’ve done as much research as possible and am trying to control the immense fatigue that goes with Sjögrens myself. I found access to LDN, Metaformin, NAD+ injections, and hormones through docs in Florida (I’m in NV). Prednisone and hydroxychloroquin from Mexico. Why are doctors so hesitant to help? Have any of you been able to communicate the depth of issues that come with Sjögrens to your doctors well enough that they understand it can be debilitating? I recently caught my first case of covid because I’m a teacher. A teacher with a compromised immune system is frightened. It’s been almost 2 months and I’m still haven’t fully recovered, but I’m not dying so as far as docs are concerned , all is well.

How do you all manage the fatigue part of Sjögrens? Do your doctors understand Sjögrens? Have they prescribed anything that actually helps? I do have Xiidra, but the dryness are the least of my concerns.

Jump to this post

@ebinca, Sjögrens, like many autoimmune conditions, is frustrating, especially the fatigue. I moved your message to this existing discussion:
- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
I did this so you can read previous posts and connect easily with members like @eileenb1022 @susanh824 @jerrysgirl3 @lolaepp @jmb73 @ozarkeagle and many others.

You may also wish to use the Search function to find many other related discussions: https://connect.mayoclinic.org/search/discussions/?search=Sj%C3%B6gren

This one looks like it might also interest you:
- Autoimmune Diseases and Fatigue
https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
What helps you cope with the debilitating fatigue?

REPLY
jerrysgirl3 | @jerrysgirl3 | Oct 1, 2023
In reply to @ebinca "I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis..." + (show)
@ebinca

I’m in an area that is very short on Rheumatologists. Therefore, the only bloodwork and diagnosis I’ve had was self funded through Mayo. Sjögrens. As Mayo is in a different state, they would not offer treatments other than Cevimeline. I’ve done as much research as possible and am trying to control the immense fatigue that goes with Sjögrens myself. I found access to LDN, Metaformin, NAD+ injections, and hormones through docs in Florida (I’m in NV). Prednisone and hydroxychloroquin from Mexico. Why are doctors so hesitant to help? Have any of you been able to communicate the depth of issues that come with Sjögrens to your doctors well enough that they understand it can be debilitating? I recently caught my first case of covid because I’m a teacher. A teacher with a compromised immune system is frightened. It’s been almost 2 months and I’m still haven’t fully recovered, but I’m not dying so as far as docs are concerned , all is well.

How do you all manage the fatigue part of Sjögrens? Do your doctors understand Sjögrens? Have they prescribed anything that actually helps? I do have Xiidra, but the dryness are the least of my concerns.

Jump to this post

What helps me the most, and I don't know what is actually helping as I'm diagnosing and treating myself as my doctors keep pushing me onto another doctor who pushes memo to the next. I have added methylfolate, elemental iron and vitamin C to help absorb iron. And electrolyte salts. I'm going to restart my great liquid vitamins that are high in the B vitamins as I'm highly anemic!! And of course afternoon naps as I'm up around 4:30-5 am now 😳. I'm usually crashing around 2 pm.
I was on hydoxychloroquine for about 3 weeks when I started having issues and doc took me off. Since then my labs have been bizarre and I'm not happy 🙁

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sstout49 | @sstout49 | Oct 2, 2023
In reply to @jmb73 "I have Sjogren's and use the Biotene products- especially the mouth spray. 30 years ago my..." + (show)
@jmb73

I have Sjogren's and use the Biotene products- especially the mouth spray. 30 years ago my dentist told me to start using them as most toothpastes, mouthwashes etc. have a drying agent in them. I use the spray before I take my pills and before surgeries. Every anesthesiologist has told me to spray a lot before the surgeries. It's over the counter and is not expensive-$6.99 at my local supermarket. It also helps stop the Sjogren's cough. I don't know what your mother is on for fibromyalgia but I use Gabapentin. That helps a lot. I hope this helps.
Take care.

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GlaxoSmithKline purchased Biotene from those who originally formulated it some years ago. GSK has changed the formula since then. It no longer contains the enzymes that were in the formula after they purchased it. Previous owners of the brand, I am told, now offer what they call Salivea mouthwash, toothpaste, spray, pretty much the same formula which includes the enzymes GSK took out of the go-to Biotene dentists recommended previously. Most dentists even today seem to be unaware that the GSK Biotene is not the same as it was prior to GSK's purchase. I learned this quite by accident when Biotine did nothing for me. Salivea mouthwash helps me a lot, and their toothpaste, has no sodium lauryl phosphate (allergic to this) in it yet still has fluorde, has also helped.

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1 reply
kikib | @kikib | Oct 3, 2023
In reply to @sstout49 "GlaxoSmithKline purchased Biotene from those who originally formulated it some years ago. GSK has changed the..." + (show)
@sstout49

GlaxoSmithKline purchased Biotene from those who originally formulated it some years ago. GSK has changed the formula since then. It no longer contains the enzymes that were in the formula after they purchased it. Previous owners of the brand, I am told, now offer what they call Salivea mouthwash, toothpaste, spray, pretty much the same formula which includes the enzymes GSK took out of the go-to Biotene dentists recommended previously. Most dentists even today seem to be unaware that the GSK Biotene is not the same as it was prior to GSK's purchase. I learned this quite by accident when Biotine did nothing for me. Salivea mouthwash helps me a lot, and their toothpaste, has no sodium lauryl phosphate (allergic to this) in it yet still has fluorde, has also helped.

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So helpful, thank you!

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frances007 | @frances007 | Oct 3, 2023

in reply to @kikib Have you tried those lozenges for dry mouth that can be found in the mouthwash section? I use the ACT brand and they are very helpful. I agree that the Biotene is a waste of money, since it does nothing for me.

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2 replies
kikib | @kikib | Oct 3, 2023
In reply to @frances007 "in reply to @kikib Have you tried those lozenges for dry mouth that can be found..." + (show)
@frances007

in reply to @kikib Have you tried those lozenges for dry mouth that can be found in the mouthwash section? I use the ACT brand and they are very helpful. I agree that the Biotene is a waste of money, since it does nothing for me.

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No haven't tried them yet. I will have to check the ingredients though because any of the sugar alcohols will upset my stomach. Thanks for the advice!

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dunbun13 | @dunbun13 | Nov 7, 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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Can you tell me how the punctual plugs work? My dryness is getting worse. Eyes and mouth.

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