Incontinence+syncope+Sjogren's=Related??

Posted by mrsjb @mrsjb, Aug 20 9:30am

I'm a 47 yr old female diagnosed with Sjogren's 2 yrs ago with my only symptoms contributed to SS being dry mouth & dry eyes.
In the last week I've had a couple episodes that now have me wondering if they are related to Sjogren's.
One night I woke up and had wet the bed! I don't have issues with my bladder.
4 days later I passed out cold, took an ambulance ride to the ER where all their tests were normal. But to my surprise the ER Dr seemed to know about Sjogren's, that my symptoms could be related and told me that I need to call my rheumatologist.

Has anyone else had these experiences?

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I have been suffering with extreme dry mouth with sores and dry eyes. My dry mouth is so bad that I have lost 40 pounds in 3 months. I finally got an appointment with a rheumatologist and even after the blood work that showed nothing I’m being treat for Sjogrens but the medication that I was put on caused me to sweat profusely, had the chills, became nauseous, and was very dizzy so I called the pharmacist and he told me to stop taking it. I also left a message for my doctor.

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@clregan2528

I have been suffering with extreme dry mouth with sores and dry eyes. My dry mouth is so bad that I have lost 40 pounds in 3 months. I finally got an appointment with a rheumatologist and even after the blood work that showed nothing I’m being treat for Sjogrens but the medication that I was put on caused me to sweat profusely, had the chills, became nauseous, and was very dizzy so I called the pharmacist and he told me to stop taking it. I also left a message for my doctor.

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Do you mind me asking which medicine that is? I'm also on one for dry eyes and mouth... She actually just switched me from Salagen to a different one.

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You may want to read this:
https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2019.01104/full
Although found in only some clients it seemed that those with higher dryness, less salivary excess, had these symptoms, see following. Overall the numbers did not meet clinical significance - but there are those of us that don’t fall neatly within the bell curve. Symptoms: fainting may be orthostatic hypotension, and urinary retention could cause the unexpected peeing.
Hopefully your next doctor’s visit will have more clear answers for you.

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@mrsjb

Do you mind me asking which medicine that is? I'm also on one for dry eyes and mouth... She actually just switched me from Salagen to a different one.

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@mrsjb I was also on Salogen(pilocarpine) but hated the sweating (first day I took it was during Covid first day my company had me go work at a factory and I had a fever from it . I waited about 10 minutes temp was back down) I switched to Cevelimine big mistake I would wake up soaked from sweating, I finally switched back to Pilocarpine

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@mrsjb

It was fine

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Wow, was the diagnosis by a Rheumatologist?

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Pilocarpine can cause many side effects including low blood pressure, low pulse rate, fainting and urinary frequency and incontinence. I would guess , if you were on the pilocarpine at the time you fainted and wet the bed, that this occurred because of the drug.
Have you ever tried the artificial saliva sprays for dry mouth? There are several on the market in drug stores and on Amazon. They help me get through the night with Sjogrens and using CPap for sleep apnea. One I like from Amazon is Spry, because it comes as a 2 pack with larger bottle for bedside or home and a small purse size bottle ton the go. It also has a pleasant spearmint flavor.
Pilocarpine is usually Rx as 10mg tablets but some people get by with 5mg. However with fainting as a side effect for you, I would be very reluctant to try it and try to get by with frequent sips of water and a dry mouth spray and /or rinse/toothpaste like Biotene.

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At age 77 I have had very dry eyes and mouth for some time. My rheumatologist says it is not Sjogrens. He diagnosed me with PMR in Nov 2020. Suddenly about a year and a half ago I became incontinent. It is now controlled by medicine. I also have had 3 episodes of fainting. Never fainted before this past year. One faint left me with a broken arm and shoulder. It is interesting how these may all be related.

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@queenie2030 Oh, you’ve been having a tough time! Have you asked your PCP or pharmacist about any drug related interactions? Since you added the medication for incontinence, you may have a drug interaction going on. Also, you may want to have your PCP refer you to a cardiologist. Not trying to scare you but fainting could also mean a heart problem. Make an appointment with your PCP to talk drug interferences. I had a drug interference once and now I look up every new drug on Drugs.com. Often, the doctor will just change the prescription. Call the doctor. You’ll be OK!

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