Sjogrens syndrome?

[rach1081985]

Anybody have sjogrens ???? I suspect I have as have follow symptoms itchy eyes seem rub alot, constantly tired recurring thrush pains unexplained rash on bk of neck dry skin knees restless legs... Never ending at mo just ploughing on and feel unwell all time..also my mouth dry etc ...I'm a diabetic too and donf want gp think symptoms high sugars as its under much better control... Can anyone hrelp me with symptoms and wa say to. My gp getting really frustrated with all this

[HollyHeski Administrator]

Seems your going through the wars at mo, with not much help from your GP.

Do you have an APS specialist that you can see soon?

My secondary SS, was suspected by my specialist, who then referred me to an APS rhuemy colleague, who did tests and diagnosed me.

From your other posts it seems you need a thorough blood workout too, to rule out B12, iron and ferritin anaemia?

Sometimes we struggle to put symptoms to 'which' desease, and need some mapping from our doctors?

Follow your instincts, and ignore your GPs frustration, it's his problem, don't add it to yours, if he cant help, ask him to refer you to someone that can.

Even if it just rules things out, you will feel less concerned and that would be a result.

[rach1081985 in reply to HollyHeski]

Thank u I will b booking appointment Monday need some kind of answers xxx

[rach1081985 in reply to HollyHeski]

How do I go about seeing my consultanr ASAP as seen her this year once abd not due till next year... Have no contact details 4 her

[rach1081985 in reply to HollyHeski]

How do I go about seeing my consultanr ASAP as seen her this year once abd not due till next year... Have no contact details 4 her

[Debbweb01]

Yes I Have Sjogrens too very badly! I have BMS TOO!!! BURNING MOUTH SYNDROME! Only 20,000 people have that in USA! Where r you from! Dry mouth gritty itchy eyes! Cuts on my tongue deep cuts! Have u been to ur Rhematologist! Make sure u take B12 supplements no matter what ur doc says! Also as Mary always say Vitamin D2 I take one per week and get B12 shots once a month! This helps Sjogrens and so does vitamin D we need more B12 than the norm!!!

[rach1081985 in reply to Debbweb01]

Thanks im in UK...I don't have rheumatologist or good consultant. How u get diagnosed pleas

[Debbweb01 in reply to rach1081985]

My eye doctor did 10 finger special blood test! See eye doc! I have gritty eyes and use no preservative eyedrops calledREFRESH! I keep water by my bed table cuz my tongue stick to roof of mouth! Someone on here said Zylemeds OTC helps! Look back on my posts from burning mouth syndrome if u can and ul c all answers I got! There arts things over the counter that help!

[Hidden in reply to rach1081985]

I’m in UK and was diagnosed with Hashimoto’s in my late 30s, then misdiagnosed with RA 8 years ago and finally diagnosed with Sjögren’s by lip biopsy which was extremely positive.

My rheum is not interested in Sjögren’s as there are no systemic treatments so people like me are mostly expected to just use topical meds and get referrals from GP to see specialists if and when the disease affects other parts eg digestive system, eyes, nervous system, joints, lungs, kidneys etc. Most are on Hydroxichloraquine but I had to stop it due to anaphylaxis.

I would mention to your GP and say you’d like testing for Sjögren’s. My GPs and rheum completely failed to identify that I had Sjögren’s and Raynaud’s. It was me pushing that finally got me answers at least.

[rach1081985 in reply to Hidden]

Thank u wa is hashamitos and lip biopsy

[Hidden in reply to rach1081985]

Hashimoto’s is autoimmune underactive thyroid and lip biopsy means cutting into the inside lip to remove about 5 small salivary glands to test for Sjögren’s if it doesn’t show up in your blood.

[rach1081985 in reply to Hidden]

Thank u so much xxx

[ATVMWF in reply to Hidden]

Hi Hidden, just as lockdown struck I was diagnosed with SS. I also have Hashimotos. Waiting for referral to consultant for AS. Have all the symptoms you describe.

[MaryF Administrator]

It is not uncommon to have this with Hughes Syndrome/APS, Prof Hughes himself often talks about the trio of disease which is Hughes Syndrome, Sjogrens and a Thyroid problem, I enclose two things for you to read: the-rheumatologist.org/arti...

and a link to an old post: healthunlocked.com/hughes-s...

I also have Sjogrens, also my Folate and Ferritin, plus B12 and D was all out for some time, years ago, much better now, and also my Thyroid function was very bad, and not picked up by the usual TSH test, again much better now that is treated.

Mary F

[rach1081985 in reply to MaryF]

Very interesting thank u so much x hopefully I get answers soon as lots of it make sense