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Sjögren's syndrome

Mar 03, 2016 10:23 AM

I'm looking for people that have this and what like to know how it affects you. Also if your taking plaquenil and what else you use for pain. Sjögren's is my primary illness but I also have fibromyalgia, anxiety, and depression. But i wanna know how Sjögren's is affecting you.

Mar 03, 2016 1:46 PM

Painedlady, I have Sjogrens, fibromyalgia, anxiety, depression, hypothyroidism, memory loss/dementia, osteopenia, ddd/tmjd, and many other issues. The sjogrens wasn't diagnosed until last Spring, but I'm convinced the symptoms have been around much much longer. I can't remember the exact year, but sometime between age 35-40 (54 now), I started having dry eyes, nose, mouth, & vagina. Of course the last we thought was due to hysterectomy & oophorectomy (1995 & 2003), but the other symptoms couldn't have any other cause. I've had issues with thrush for the past 3 years, but in Dec 2014 I out a rash on my inner right cheek. The dentist called it a fungus but the meds didn't help. The pcp called it something else & the meds didn't help. My rheumy doc suspected sjogrens and sent me to an ENT for biopsy. It came back politics and I was started on Plaquenil. Before the Plaquenil my fibro pain & sjogrens pain (previously not identified) was high every day, 8+. Within one month of using Plaquenil my pain level dropped to a 3-4 daily, and usually never higher than 6-7 even in flares.

Fibro flares consist of increased muscle/tendon/ligaments (soft tissue) aches and pains, preceded by thrush. Fibro fog sets in worse than normal, even with dx memory loss. Sjogrens flares involves tiny, painful & burning, pin-prick blisters all inside my mouth, followed by swelling & painful joints; usually hands, knees, spine. I also become very fatigued with excessive dry eyes, nose, & mouth. Even my skin has become dry and flaky. I'm constantly getting swollen glands in my throat & underarms.
I have bladder/urethra issues (IC), elevated inflammation levels, vitamin D efficiency, OA, and IBS-C. I believe many symptoms all point to sjogrens as the actual culprit for me. I hope I haven't forgotten anything, and that it's helpful to you. 🙂💕🙏🌼

Mar 03, 2016 8:25 PM

Wow! I have a lot of thrush issues too! How did the ENT use the thrush for diagnosis? I suspect I have sjogrens too but the blood tests said no infammation....I think there is more going on and the tests don't show it.

Mar 03, 2016 8:37 PM

It wasn't thrush they biopsied. It was a different scaly rash, in one area that kept spreading outwards. The rheumy doc examined it and said the best way to know what it was would be a biopsy. She sent me to the ENT doc, who cut out 3 separate sections for the biopsy. Gosh did my mouth hurt for 2 days! I found out later that the standard is to take 5 samples. But all 3 sections showed positive for sjogrens, and that's what have me the official dx. My GI doc is scoping me Wednesday to see if I have thrush in my GI tract, because it keeps coming back.

Mar 03, 2016 8:40 PM

As hard as it is, be patient and keep notes of symptoms. Hopefully you will find answers sooner than later.

Mar 03, 2016 8:47 PM

I wish my GI doc would check in my GI track!! I take diflucan 3 days a month to sort of keep it at bay. But I'm TIRED of it!!! Sometimes it really hurts!!!

Mar 03, 2016 8:52 PM

My GI doc said we should be on abx (antibiotics) 3 weeks to clear it up. Because my other docs keep putting me on short periods of diflucan he said scoping should be done. He retires the last day of March.😖 I hope I can find another good one.

Mar 04, 2016 1:53 PM

Yikes! That sounds terrible! I was under the impression that Sjogren's was "just" cold hands and that weird redness. Thank you for teaching me more about this strange and terrible illness.

Mar 05, 2016 10:07 AM

Gardner I tested negative for inflammation but positive for Sjögren's syndrome. I tested positive for Lupus by my primary doctor but then I finally saw the Rhuematologist who said Sjögren's syndrome and fibromyalgia is what exactly I had to her test. She said she not going to list lupus cause my test really had low levels and it didn't matter because both getter treated the same way. So just see the Rhuemy and get their results and see what happens.

Mar 05, 2016 10:15 AM

Flappy, me and you have so many health issues in common. I also have hypothyroidism, vitamin d deficiency, IBS-C, and memory loss. Depression, ptsd, anxiety and more stuff I'm forgetting. See this is why I love this group because someone is going through the same thing.

Mar 05, 2016 10:17 AM

And we help each other with everything: advice, personal experiences, venting, whatever the subject is we got it covered.

Mar 06, 2016 5:04 PM

Painedlady, AlwayZ also shares many of the same symptoms too. She, ferretbandit, and I all have a genre defect, MTHFR gene, where we don't absorb B9 & other B Vitamins properly.

Mar 06, 2016 5:25 PM

That's intriguing. I have recurring D deficiency, 2500 to 8000 mg a day to keep me in a good rrange. Not being able to go outside every day makes it hard too.
I take a B12 with Intrinsic Factor to help absorb iron, otherwise I stay anemic no matter what. The intrinsic factor also helps with the stomach lining, GERD, and ulcers.
I might see if my Medicare doctor would do gene testing, and if Medicare would approve it... Although sometimes it's better not knowing, since little can be done for some things.

Mar 06, 2016 5:30 PM

Have uctd, possible sjogrens or lupus or both. Take plaquenil 200mg 2x a day. It helps immensely, improved my joint pain by 75% or so in my hands (oddly, just my hands). It helped with some other symptoms that have since returned for the first year as well. Only side effect is mild nausea which I treat with an occasional pepcid ac per doctors recomendation.

Keep in mind plaquenil as far as I know does not treat fibro symptoms. My fibro pain is the same as before I started it.

Mar 07, 2016 7:47 PM

My rheumy doc keeps a watch on me for anemia due to taking Plaquenil.

Mar 07, 2016 7:50 PM

Shyia, I don't know if it's coincidental or not, but taking the Plaquenil for sjogrens also reduced the intensity of daily fibro & flares. I'm very thankful because I can't take pain meds most others use. It was a surprise to me and my doctor.

Mar 07, 2016 10:43 PM

Floppy and pained lady- thank you for the info. My doctor said there was a panel for Sjogrens and I did not meet the criteria. I feel like something automimmune is going on though...

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