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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

char8972 | @char8972 | Apr 8 8:18am

Not to alarm you but Sjorgens has been proven to be a precursor to cancer. I was diagnosed with Sjorgens 12 yrs ago. Four yrs ago I was diagnosed with St 4 Lymphoma. My son is a Dr. of Internal Medicine and he told me when Sjorgens is diagnosed , he automatically does a cancer panel now. I am finally in remission but ask your Dr. about this. ❤️

REPLY
2 replies
cindylb | @cindylb | Apr 8 10:03am
In reply to @frances007 "in reply to @cindylb Wow, your journey has been a long one. I have this syndrome..." + (show)
@frances007

in reply to @cindylb Wow, your journey has been a long one. I have this syndrome and will soon be seeing an opthamologist again to test for Wilson's Disease. In my case, the labs so far have been negative, but as you know,labs are not always accurate. My dermatologist mentioned something called Nizoral, but I have not tried this for my scalp. My problem does not sound as bad as yours. I am sorry. You can find the product on Amazon, and if you are a Prime Member the cost is about $8 for 2 oz. No nuts. Cortisone, small amount.
You know, autoimmune disorders are so difficult to diagnose and treat. I am not looking forward to my endoscopy, colonoscopy later this summer or early fall. For me, the Raynauds is the worst. I must look like a fool wearing fur gloves during the hot summer in CA.
Best to you my friend

Jump to this post

Thank you so much for the scalp option. It's been a problem for years. I'll let you know if I find it and if it works.
I was diagnosed with dry eye decades ago and was on Restassis but over the years and after seeing 7 opthamologists, only one finally recognized the systemic nature and did the ANA test, which came back positive for me. It's a long road and difficult with autoimmune, as you say. Good luck. Tell me more about Wilson's disease if you have time. I hope you get some answers. Sometimes just knowing what you have is helpful.....even if they can't fix it or don't completely understand it. Hugs.

REPLY
cindylb | @cindylb | Apr 8 10:07am
In reply to @char8972 "Not to alarm you but Sjorgens has been proven to be a precursor to cancer. I..." + (show)
@char8972

Not to alarm you but Sjorgens has been proven to be a precursor to cancer. I was diagnosed with Sjorgens 12 yrs ago. Four yrs ago I was diagnosed with St 4 Lymphoma. My son is a Dr. of Internal Medicine and he told me when Sjorgens is diagnosed , he automatically does a cancer panel now. I am finally in remission but ask your Dr. about this. ❤️

Jump to this post

So very sorry to hear about your Lymphoma. People with Sjogren's are at extra risk of getting it...glad you're on the mend. I'm a breast cancer survivor which means my body already likes to have cancer (ha ha)....hopefully not the addition of Lymphoma. It's something to be mindful of and make sure doctors are on alert. My rheumatologists mentioned it and are actively checking for any signs. Hugs and continued remission for you!

REPLY
frances007 | @frances007 | Apr 8 10:10am
In reply to @char8972 "Not to alarm you but Sjorgens has been proven to be a precursor to cancer. I..." + (show)
@char8972

Not to alarm you but Sjorgens has been proven to be a precursor to cancer. I was diagnosed with Sjorgens 12 yrs ago. Four yrs ago I was diagnosed with St 4 Lymphoma. My son is a Dr. of Internal Medicine and he told me when Sjorgens is diagnosed , he automatically does a cancer panel now. I am finally in remission but ask your Dr. about this. ❤️

Jump to this post

in reply to @char8972 Thank you for this information. Just walking outside these days exposes one to just about any thing "awful." A cancer panel? What is that? I am sorry about your lymphoma. What kind do you have?

REPLY
buddabu | @buddabu | Apr 9 10:38am
In reply to @twinkie23 "I’m not sure about the connection between gallbladder removal and the development of Sjogrens but I..." + (show)
@twinkie23

I’m not sure about the connection between gallbladder removal and the development of Sjogrens but I did have my gallbladder removed in 2008. My rheumatologist recently mentioned Sjogrens as a possible 2nd autoimmune disease I may be suffering from in addition to SLE. My new symptoms are neurological and referred to as Small Fiber Neuropathy and/or pure sensory Polyneuropathy after EMG and nerve conduction test. I am unsure of the next step as I have an appointment with a Neurologist next month. Does anyone have neurological symptoms who have been diagnosed with Sjogrens?

Jump to this post

Oh yes!! That was my first obvious symptom. Small Fiber Sensory Neuropathy. I found that Pregablin gives me the most relief. But nothing seems to stop the burning.

REPLY
consekaus | @consekaus | Apr 10 4:28pm
In reply to @b25alpha "Sorry to hear that you found out by what seems to be accidentally that you have..." + (show)
@b25alpha

Sorry to hear that you found out by what seems to be accidentally that you have Sjogrens. My understanding is that it is a genetically passed condition that runs in some families. If you haven’t already been tested via a blood test, I would start there for confirmation.

Jump to this post

Sjogren's is NOT hereditary.

REPLY
2 replies
b25alpha | @b25alpha | Apr 10 8:11pm
In reply to @consekaus "Sjogren's is NOT hereditary." + (show)
@consekaus

Sjogren's is NOT hereditary.

Jump to this post

I was told by my Rheumatologist that Sjogrens can be hereditary. ??? From what I’ve been able to glean from 🧐 research, no one really knows why it occurs and how to treat or cure it. Symptom management seems to be the only course of treatment along with measures to reduce inflammation. Personally I’m battling EBV - ( Epstein Barr Virus), which I’m told has brought on Sjogrens, rheumatoid arthritis, and hashimotos. All these conditions have been confirmed via ANA( anti nuclear antibody) blood tests. Basically, my body is at war against itself on all fronts.

REPLY
b25alpha | @b25alpha | Apr 10 8:16pm
In reply to @consekaus "Sjogren's is NOT hereditary." + (show)
@consekaus

Sjogren's is NOT hereditary.

Jump to this post

Please see the info. At the link below. https://sjogrenssyndromenews.com/what-is-sjogrens-syndrome/

REPLY
View MoreView Less
Please sign in or register to post a reply.