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Sjogren's Syndrome + POTS

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pam_87693
pam_87693

For anyone who has Sjogren's Syndrome and feels their symptoms may relate to POTS, please look at POTS UK on the NHS site. You may be interested to learn that the BSSA the charity for those who suffer from Sjogren's and its attendant diseases, will be discussing POTS at their next conference in October. I am Pam from British Sjogren's a FB group run by members of the BSSA for anyone who has Sjogren's. The BSSA doesn't do FB but our Administraters are all BSSA members. Anyone who is interested in the relationship of these two syndromes, I would suggest you look up the BSSA and join, if you like FB please contact us. Please note we will not allow any drug to be talked about for SS other than those in the BNF 

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3 Replies

  • kandypat
    kandypat pam_87693

    Posted

    Hi Pam,  what is POTS?  I have Sjogrens and PBC and am always interested in finding out more info.  thanks
    • pam_87693
      pam_87693 kandypat

      Posted

      Hi there POTS stands for Postural tachycardia syndrome. It is common in EDS a group of problems where people are double jointed, it can also be a symptom of Sjögren's, Lupus, Hughes syndrome and diabetes. In relation to Sjögren's and EDS as I have both! I kept very active! In regard to Sjögren's I kept active but also developed a hormone imbalance. My father gave me EDS my mother had Psoriasis and in her womb I inherited PCOS! I don't have the markers for SS I am Seronegative and lip biopsy negative. I would suggest NOT to read the somewhat misinformed posts that come from other countries. Many youngsters with EDS which is a collagen abnormality get POTS, they are mainly female and faint. I didn't and don't! However since the birth of my last son 29 years ago I have POTS! Again I don't faint but I started to feel dizzy after a really terrible pregnancy. Then I started to sweat about 16 years ago with everything I did, it's called Hyperhydrosis. My Sjögren's was confirmed the following year. However when I stand up I feel faint so I drink a good glass of tap water before I get out of bed. I have low BP so have been advised by my neurologist to eat more salt! That has helped enormously. However if you have high BP don't take salt! Then POTS isn't so bad but I do have small fibre neuropathy caused by Sjögren's. The problem with all medications is while some are beneficial others make you worse, so despite knowing 2 medications that might improve the Hyperhydrosis my neurologist advised me not to try them as they will make my sicca symptoms worse! I hope this at least helps Pat
  • pam_87693
    pam_87693

    Posted

    Please those in the UK be guided by the advice of a Consutlant for Sjogrens, SLE and APS not by anyone who is trying to give the wrong advice. If you have POTS again be advised as to the correct drugs suggested by Neurology. The symptoms of AI neuropathies can be very similar to another disease. Only a skilled neurologist will advise you with several tests what you have wrong with you. All drugs have side effects so only someone highly skilled in all these problems can give you the correct medication. Please do not be tempted to take advice from other countries if you are in a FB group. Patient is the best forum in the world and will give you the best advice. If you suggest drug not appropriate you will be blocked. It's that simple. So if you suggest L-N or a powder N-----------m it is not appropriate for Sjögren's 

     

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