Sjogren's Syndrome

[Annodomini]

I saw my rheumy today. She's the Manchester professor who has a clinic at our local hospital and very au fait with PMR and pred reduction. She is in no hurry to get me off steroids (now 4.5) and trusts me to oversee my own reduction. However, she said that one of my blood tests (globulin, I think) indicated that I might have Sjogren's syndrome into the bargain. I have Googled it (of course!) and do have some of the symptoms - dry eyes and mouth, for example. Has anyone else here had a diagnosis of this condition? I am also to see the rheumy nurse in a couple of weeks to arrange to have annual bisphosphonate infusions.

[PMRpro Ambassador]

I had problems with dry eyes early in my PMR journey - but it was never identified as Sjogren's as such. Dry eyes are often found in various autoimmune conditions.

Celtic, I think, had a similar dx, not Sjogren's though some really bizarre name!

Sorry - not very helpful really.

[Celtic PMRGCAuk volunteer]

Anno, there are several blood tests for Sjogren's and the one you are referring to could be immunoglobulin or gamma globulin. They are blood tests for specific antibodies which can be quite common in Sjogren's. When I had suspected Sjogren's, I had similar tests but even without these antibodies it is still possible to have Sjogren's.

In my case Sjogren's was one of the diseases suspected when following a severe throat infection, my glands remained swollen for many months and I had a very dry mouth, waking in the night to find I was so dry that my tongue was stuck to the roof of my mouth. Lymphoma was also suspected but thankfully a CT scan at the time ruled that out. Eventually and In despair I made a private appointment with my rheumy who suggested that there was a possibility that I might not have Sjogren's but a closely related syndrome called Mickulitz's, and if that was the case it would eventually resolve of its own accord. He was right, it did, taking about 7 months in all.

Have you tried eye drops (artificial tears) for your dry eyes? The British Sjogren's Society recommended a particular chewing gum to help with the dry mouth at the time but I'm sorry I can't remember which one!

[venezia1]

Hi - I've had Sjogren's alongside RA and GCA for over four years - apparently it's quite common for autoimmune diseases to "cluster" like that. At first the dry eyes and mouth were irritating but not concerning, but gradually they have become drier and often I wake up with my eyelids so stuck together that it takes several minutes of judicious applications of Lacri-lube before I can open them.(Ordinary eye drops don't cut it any more). It worries me because optometrists have told me the surface of the eyes are damaged now, but there doesn't seem to be any treatment available. As far as the dry mouth is concerned, I've tried various sprays recommended, but each is more revolting than the last!

I'm currently on 10mg pred reducing from 80mg.

By the way, what is bisphosphonate?

Good luck and let us know of any treatment you find successful.

[Annodomini]

Thanks for the info. Bisphosphonates are things like Alendronic Acid which I can't take orally.

[Annodomini in reply to Annodomini]

Hi, sorry, Venezia, for that cursory reply to your informative post. I was just waking up! Your Sjogrens sounds miserable. If I do have it - and there's just a hint of it in blood test results - it's nothing like as advanced. I do have dry eyes and dry mouth, but not to the extent that you have. What does concern me is that my left eyelid is droopy and consequently my right eye is probably doing a lot of the work. Maybe I read too much! The Bisphosphonate infusions are to arrest the progress of osteoporosis in my left hip and prevent it developing in other areas like my spine. I can't take AA orally because it would exacerbate a reflux problem that I've had for a long time.