Sjogrens syndrome

[Toobusyforthis]

Hi all , on Monday I had a follow up appointment with my Rheumatologist, 8 weeks ago when I saw her she took lots of Bloods and was very thorough. She has told me from the results from my blood tests that in actual fact she now suspects I have ‘Sjogrens disease and not Polymialgia!! To say I was shocked us an understatement, I have a thyroid complaint which has similar signs I.e. dry eyes , fatigue , etc but she is convinced this is my problem. She has prescribed Hydroxychloroquine 200 mg one day then 400 mg the other! Please can I have your thoughts on this? Kind regards

[SheffieldJane]

I have wondered about this condition too. I have the dry eyes and dry mouth, as well as treated Hypothyroidism and Psoriasis. My GCA has been diagnosed by ultrasound. I spend a fortune on remedies for the various symptoms. You have to be alert for swollen Lymph nodes, because you can develop Lymphoma. Apart from that it seems to be a case of managing symptoms, pain relief etc. I hope the drugs help you. There is a support group on HU I think. There’s a lot of overlap though.

[Toobusyforthis in reply to SheffieldJane]

Thankyou , I’d never heard of it , she said she was going to diagnose Lupus but as I don’t have a rash it’s more likely to be this Sjogrens. Syndrome 🤷‍♀️ I’m not comfortable with taking the drug she has prescribed as it affects your eyes long term x

[Longtimer in reply to Toobusyforthis]

My hairdresser has Lupus, and also Sjogrens....she said she was told they very often do together She takes Hydroxy.....I had this discussion with her because I have very dry eyes, tried lots for that, a dry nose, always sniffing, feeling I can`t breathe and now a very dry mouth, struggling to swallow sometimes, but just feel too drained to deal with it, lots of our problems I think are allergies, but it`s finding out what it is that is the problem!....We seem to collect these after having one or the other...

Good luck....

[SheffieldJane in reply to Longtimer]

I so agree. I have all these symptoms. Only my GCA diagnosis was proven which does suggest that PMR is also present.

[Toobusyforthis in reply to Longtimer]

Yes me too, always sniffing and choking on my food or clearing my throat 🤷‍♀️ I think more water is the answer x

[Longtimer in reply to Toobusyforthis]

I try to drink more.....lips dry and sore as well.....my son when we speak on the phone says, why do you keep sniffing and clearing your throat.....I say...Pass!.....I just feel like I am always moaning about something!.....

[Toobusyforthis in reply to Longtimer]

😂😂 you sound like me xx

[SheffieldJane in reply to Toobusyforthis]

As PMRPro has advised. You need to talk to the people with this diagnosis about life with this condition.

[Toobusyforthis in reply to SheffieldJane]

Hi where did you say there was a support group? Please x

[SheffieldJane in reply to Toobusyforthis]

If you Google, HealthUnlocked and Sjögren’s , you will get to the equivalent of here and there were other options below.

[Hidden]

I was first diagnosed with sjorgens when I was 50. Dry eyes and mouth tend to go with the diagnosis. Now 20 years later PMR. The over the counter eye drops especially Systane are the best, I also have had two implants. The flares were never really that bad, my Sjorgrens manifested itself with drying more of the respiratory and digestive system. Drink plenty of water! The only other medication I used was Mobic or aleve, if the fibromyalgia associated with it was to bad.

[Toobusyforthis in reply to Hidden]

Hiya Gosh digestive problems , fibro? What else lol 😂..Funny I was relieved it wasn’t Polymialgia but I’m not sure now lol xx

[PMRpro Ambassador in reply to Toobusyforthis]

If you gave me the choice I'd always choose PMR - for the vast majority if patients it burns out and you get off pred, unlike most autoimmune disorders which are for life.

[SheffieldJane in reply to Hidden]

Are you thirsty a lot of the time too Hoochie?

[Hidden in reply to SheffieldJane]

All the time when I was first diagnosed! Now I know I need to drink a lot of water to counteract the dryness. When I don’t I then to dry out the digestive tract that leads to constipation.

[Longtimer in reply to Hidden]

I drinks lots too, but it takes so much energy to keep visiting the loo!.....needs must as they say....

[Toobusyforthis in reply to Hidden]

Omg that’s me! I’m always constipated ..I hate water as well …x

[Toobusyforthis in reply to SheffieldJane]

No I wouldn’t say I am tbh ..xx

[Hidden in reply to Toobusyforthis]

Need to drink lots of water

[PMRpro Ambassador]

I assume she did the antibody test for Sjogrens? It is possible to have all the symptoms of Sjogrens without the antibody being present and then it is called sicca syndrome (sicca means dry). And of course - you can have both!

Hydroxychloroquine is used a lot in lupus and very few patients have eye problems as a result - and the dryness itself can cause eye problems. If you have the regular eye tests that are recommended you should be fine.

If you want to know more about hydroxy I recommend going over to the LupusUK forum here and ask questions there - there are some very knowledgeable people over there and LupusUK is a terrific charity

[Toobusyforthis in reply to PMRpro]

Yes she did the test for it and it’s positive , Thankyou ok I will xx

[Bailybiscuit]

I was diagnosed with PMR in 2014, I was always A typical so was sent to a rheumatologist. There I got put on Hydroxychloroquine but for PMR. I took it for a while but my eyes ached. I know now it was not that which caused the problem. I was taken off of it and put on Methotrexate. Then I was diagnosed with Seronegative arthritis, then psoriatic, then Inflammatory arthritis. Around this time I asked my rheumatologist if it couldn't all be Sjogrens as I had the dry eyes and dry mouth. He said that it could be. I have injected with Benepali and now Imraldi as well as Methotrexate and taking steroids. I don't feel that these work very well but am told I could be worse. I have tried all sorts of eye drops but am actually seeing an eye specialist for Sjogrens now, so hopefully my eyes might improve. I hope you get better treatment than I have had

[Toobusyforthis in reply to Bailybiscuit]

Oh no sounds like you’ve really been through the mill, hope your getting on top of it now xx

[Toobusyforthis in reply to Toobusyforthis]

Thankyou for your reply xx

[Bailybiscuit in reply to Toobusyforthis]

I hope it might help a bit. It seems you have to keep fighting for treatments and scans.

[Bailybiscuit in reply to Toobusyforthis]

I don't know really. I have been having my knees swell with fluid since 2014. My rheumatologist said it was OA. An x-ray showed the knees were a bit worn. I had my knees drained and injected with steroids several times. About 3 years ago I asked for a scan on my knees. I had an mri last year. It showed some was caused by RA they said, not that I have that. My rheumatologist won't drain my knee any more and won't think about changing my medication either until next year. I am just told I could be worse.