Anyone with Sjorgren's syndrome

ellerd

I have RA and have also been diagnosed with Sjorgren's syndrome. I get very tired (sleepy) and weak. I pick all any sore throats or colds that are going round. I have "horrible" toenails, they were tested but its not caused by any sort of virus. They become very bruised looking and then fall off. I have dry eyes for which I use drops. It would be interesting to talk to anyone who has this. I am taking sulfasalazine.

villier

Hi ellerd

I am currently seeing a Rheumatologist who is sitting on the fence at the moment, my Neurologist is convinced that I have Sjogrens and that is what is causing my very rare neurological condition as they go hand in hand. I don't have the nail problem but I do have dry eyes and a bit of a dry mouth, fatigue and muscle pain. I don't get any oral meds as I get IVI treatment for my neurological condition apparently that should be enough to keep things under control but it doesn't. My sympathies to you I hope the meds are helping to keep things under control for you..............Marie x

barbara12

Hello ellerd
Sorry I cant offer any help, but I see Marie has given you some help ..I hope you get the help you need..x

suzygirl

I have SLE and secondary sjorgens. It causes me a lot of problems, with the dryness in various areas, with not a lot of effective treatment. I have drops and gel for the eyes and I carry water constantly for the dry mouth. The doc prescribes dry skin lotion. I also suffer from ulcers due to the dryness in various places.

Did you have a specific question?

numptynora

Yes I have SS and RA, my eyes are mostly affected but I also have a dry mouth, instead of two year checks with the optician it's each year which can make it expensive I also have drops which usually end up on my nose :roll:

Boomer13

Hi ellerd;

At my appointment this month with the rheum doctor, he hinted at Sjogren's for myself, as I have a neurological problem that flares and remits, and badly dry eyes, sometimes mouth with ulcers. I have been negative for bloodwork for lupus so he feels possibly my symptoms are due to Sjogren's. I have only recently learned that it can cause neurological symptoms; mine have been a mystery for about three years.

As with all things rheumatological, it seems the diagnosis will take a while. I only recently have learned the full extent of symptoms that Sjogren's can cause. I have PsA with spondyloarthopathy, Raynaud's, and take DMARD triple therapy. I have recently had eye symptoms which are extremely unpleasant and have begun using an eye drop. This seems to have a flare and remit cycle as well.

So, while I wait to see if Sjogren's may explain some of my symptoms I'm very glad you started this thread and will watch for other posts.

The only nail symptoms I have are ridges, splinter hemorrhages, pain in the nailbed and some flaking at edges. I attribute these to PsA/Raynaud's. I have tremendous fatigue that I really hope will respond to a medication at some point; it makes my days unbelievably short.

I try to stay away from viruses because I too get smashed by them. This is easier now that I don't work; there was always a virus going around my work place. I think all of us with wonky immune systems need to avoid these because they stimulate the immune system and it's already in overdrive.

Hope you can avoid these. Take care, and I hope you feel better soon.

Best wishes, Anna

trepolpen

Hi ellerd

dry eyes is pretty normal with RA & the treatment is the same as Sjorgren's syndrome , just make sure you look after your eyes because you can get other problems with them caused by RA

ellerd

Thanks for the replies. It really helps to know I'm not alone. My muscles get weak so quickly and I too have short days because of the tiredness.
Am seeing my GP on Tuesday re a recent blood test. Will keep posting.

Boomer13

Please do keep posting, ellerd. I have the muscle weakness too. The doctor originally thought it was from being on prednisone, but it seems to be an autoimmune phenomenon. Please let me know what you find out...

suzygirl

I also have the muscle weakness, and it is auto immune. It is a horribly frustrating symptom.

Mat48

Like Villier and Anna (Boomer) I have strange neurological symptoms and have wondered about Sjogrens too. I have dry eyes, my optamologist confirmed with a tear break-up blink test, have quite a dry mouth often but nothing very severe. But then I'm fifty now and apparently - so I was informed by a woman on the SS helpline a few months ago - age has to be factored in with dry eyes, mouth etc. She felt my issues in my legs were too severe to be caused by possible mild secondary Sjogrens.

I haven't ruled SS out - nor Raynauds either - but am presently focussing on neuro conditions again because steroids haven't improved the sensory issues at all and I feel they would have if it was part of my RA.

My sister has burning mouth syndrome and has been referred to a rheumy for possible Sjogrens so I've just looked it up again for her and it can cause some of the same symptoms as RA too but I think that's in primary form not secondary - which is usually milder I believe. The woman on the helpline takes 25 mg methotrexate for hers. Mat

lavenderlady

I have been diagnosed with Sjorgrens Lupus and RA to go with my OA and many other auto immune problems my problems are very dry mouth burning tongue mouth ulcers sore and gritty eyes etc, I also have quite bad muscle pain and weakness this is going back to 2005 while on holiday my right arm dropped and I could not lift it, the weakness has improved but is still very weak and I cannot lift my arm very high I get muscle jumps which hurt a lot they did many many tests with Mri's etc they thought it was MS for a while,I was wondering if anyone else here has lupus as well as this and RA