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Sjogren's Syndrome

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pam_87693
pam_87693

Hi I am Pam from the FB group British Sjogren's our adminis are members of the BSSA the charity for helping to support people who suffer with dry eyes and mouth. The Sicca symptoms of Sjogren's. I am negative to the Sjogren's markers but have a positive ANA. If you can relate to this please either phone the BSSA or ask to join BS as we have a number of seronegative Sjögren's in our group. Many have a cascade of symptoms which could relate to either another autoimmune disease or to you being double jointed either now or historically. I was Beighton 9/3 now this is now called being Hypermobile, if you then get dryness, then have fibromyalgia, ME or chronic fatigue syndrome you may have Sjogren's. If you have had a very positive ANA that has quite a high titre mine 20 years ago was 320 (remember if you are taking an anti rheumatologigical drug like Methotrexate) it stamps out your ANA you may have symptoms relating to POTS. If you think any of this might relate to you please look at POTS UK website on Patient UK 

1 like, 26 replies

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  • mrsmop
    mrsmop pam_87693

    Posted

    https://patient.info/health/postural-tachycardia-syndrome-pots-leaflet

    There's the link to POTS Pam.

    I don't have Sjögren's  but I do have dry eyes and autoimmune diseases.  The POTS page is very interesting, thank you.

     

    • pam_87693
      pam_87693 mrsmop

      Posted

      I am glad I was able to help, sorry about your AI diseases, if you need advice about the dry eyes I have had a positive Schirmer from age 20!
    • pam_87693
      pam_87693 mrsmop

      Posted

      You are most welcome please do tell your GP about the dry symptoms as they are the sicca symptoms of Sjogren's and there are drugs to help with these
    • pam_87693
      pam_87693 mrsmop

      Posted

      Yes there is look at POTS UK that could be interesting to you, the dry problems are the sicca symptoms they may be age related but if you have had a blood test with a raised ANA that is an indicator of an autoimmune disease 
  • Emis_Moderator
    Emis_Moderator pam_87693

    Posted

    Hi Pam,

    I have moved this discussion to the Sjogren's group, I'm not sure if you were aware we had this group? The links below are to the organisations you mention.

    http://www.potsuk.org/

    https://www.bssa.uk.net/

     

    • pam_87693
      pam_87693 Emis_Moderator

      Posted

      Thank you Emis, yes I and my admins are BSSA members and my Consultant Dr. E. Price is a Sjogren's expert and President of the BSSA. She likes odd patients like me, I don't have the SS markers but did have a positive ANA before the MTX knocked it out! Something my GP and local Rheumatologists obviously didn't know. She diagnosed that I have scoliosis, that got me thinking, I realised I have EDSIII now EDSHT and I have felt faint since my last son was born, I read about POTS she agreed with my diagnosis and the BSSA are going to talk about Sjogren's + POTS at their next conference. The speaker is Dr. Gordon Ingle, I. Have asked my GP to refer me to him, as a result and he did last Monday
    • Sherrieberries1
      Sherrieberries1 pam_87693

      Posted

      I don't understand the abbreviation in this..could you please fill me in...

      Thanks

      Sherrieberries.

    • pam_87693
      pam_87693 Sherrieberries1

      Posted

      Hi I am Pam from British Sjogren's which is the Facebook Group for people who suffer from Sjögren's syndrome. Your dry eyes and mouth are the sicca symptoms of Sjogren's and the Fibromyalgia is common in Sjogren's we are run by members of the BSSA which is the charity for people who suffer from this illness 
  • Sherrieberries1
    Sherrieberries1 pam_87693

    Posted

    I do suffer from Fibromiligia and I have chronic dry mouth and eyes. Even been given script for very very expensive eyes drops. I am going to the site now.
    • pam_87693
      pam_87693 Sherrieberries1

      Posted

      Yes please do I am Pam Newman if you befriend me I will get you in as soon as I can, if not another admin will we are a closed group so what you say stays in the group. We do support the BSSA the charity for Sjogren's who do research so if you feel it's worth joining there are local support groups where you can chat to others 
    • Sherrieberries1
      Sherrieberries1 pam_87693

      Posted

      I am having trouble finding you. Please send me a request @ Sherrie Sutton Harris. 💖
    • pam_87693
      pam_87693 Sherrieberries1

      Posted

      Facebook British Sjogren's 

      I am Pam I will give you my FB address and email privately 

    • pam_87693
      pam_87693

      Posted

      Sherrieberries did you find us?
    • maureen42261
      maureen42261 pam_87693

      Posted

      Pam, are there any groups in Wiltshire, I would be interested in joining thanks for info! 
    • bee21a
      bee21a maureen42261

      Posted

      Hi Maureen,

      There is an active Wiltshire support group.

      We are friendly and fun, and can help with some of your questions.

      If you ring the BSSA, or look at their website, you can get our details.lol

    • pam_87693
      pam_87693 maureen42261

      Posted

      Yes Maureen there is a big group in Witshire and Dr. Price the President of the BSSA is at The Great Western Hospital Swindon. I run British Sjogren's the FB group for BSSA members, all our admins are BSSA members. 
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