1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Would love to communicate with other SS sufferers

Posted , 4 users are following.

irene47920
irene47920

I'm a SS for many years and would love to hear from other sufferers.

0 likes, 5 replies

5 Replies

  • christine00342
    christine00342 irene47920

    Posted

    Hi Irene, I’m still waiting for Diagnosis from blood tests a fortnight ago. Drs and consultants all think I have it, but won’t give me any medication until they know for sure. I have known for 2-3 years there was something wrong but as I have under active thyroid too I’ve always put it down to that. Until Jan of this year, when everything flared up. Swollen and painful knees, Dry mouth, dry ears, dry eyes, but the chronic tiredness is the worst, debilitating. They are going to put me on Hydroxyquinine, anti malaria drug to dampen the immune system, but only WHEN they get blood test results.
    • irene47920
      irene47920 christine00342

      Posted

      Hello Christine. I too have an underactive thyroid and medication has helped in that department.For my dry eyes drops have really helped too but my biggest problem is swallowing food which has to be mainly blended.My blood test results confirm rheumatoid arthritis but I have absolutely no joint pain at all. Have had loads of dental treatment over the past 20 yrs and still at it. Thanks for getting in touch and good luck to you....
  • beverly39559
    beverly39559 irene47920

    Posted

    Hi........I was diagnosed with Sjögren’s about 7 years ago but I’m sure I’ve had it for 20 years or more. My biggest problem, like many others is an extremely dry mouth. So afraid of problems with my teeth. Go to the dentist twice a year and now using a water pick which really keeps my mouth much cleaner.

     

    Also in the past 5 years I developed neuropathy in my feet and lower legs which was progressing rapidly so found a great neurologist in Phoenix and I’m on an immunosuppressant and it hasn’t progressed in about 4 years but of course hasn’t gone away. My balance is bad so do exercises everyday to keep a strong core. 

    At times fatigue is an issue but helps if I get to bed early and get a good nights sleep which isn’t always the case.  I also have arthritis mainly in my hands. 

    Otherwise i I have a fairly normal life and doing okay for a 72 year old.........😎

    • christine00342
      christine00342 beverly39559

      Posted

      Hi Beverly, yes I’m 76 & sure ive had this for a long long time. The Chronic fatigue is the worst for me. Can I ask what medication you’re o. Xx

    • beverly39559
      beverly39559 christine00342

      Posted

      Hi   I’m on Restatis for dry eyes. Azathioprine 100 mg dly to suppress my immune system from further damage to peripheral nerves. 

      Amitriptyline 50 mg at night to help sleep and nerve pain. 

      I’ve been on all of these for 5 years and I don’t think I’ve gotten worse during this time except for fatigue at times. 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.