Sjögren's syndrome, only symptoms are extremely dry, scaly face

Posted , 5 users are following.

I've always had dry skin but after having my daughter a year ago, things got tragic. My cheeks, eyelids. And patches on my forehead and chin peel and is red like a sun burn constantly. I've been to a dermatologist and rheumy. All they can tell me is I have sjodrens syndrome and gave me some steroid cream that doesn't work. I'm also breastfeeding and wondering if that could contribute to this. I'm miserable 24/7 and just want my normal skin back. Help please!! 

0 likes, 6 replies

6 Replies

  • Posted

    Just a quick question. How did they confirm or diagnose that you have Sjögren's Syndrome?

    • Posted

      I had about 3 different types of blood tests done and it finally came back on the third one positive for sjodrens. 
    • Posted

      I also had three biopsies from the patches on my face, and two from the ones on my body sent to Cleveland clinic and they all came back just as eczema but I've had eczema as a child and that is NOTHING compared to this. 

  • Posted

    Oh you poor thing! Your skin symptoms sound so miserable. It does sound like your pregnancy may have triggered something off however you need to see a Rheumatologist for further advice.

    If your blood tests have come back positive for Sjögren’s then it's not enough to prescribe you some steroid cream and send you on your merry way. This needs to be investigated further to eliminate other autoimmune or immunological possibilities.

    • Posted

      A rheumatologist is the one that diagnosed me with SS and said my levels that indicate that I have an autoimmune disorder are threw the roof. I'm not sure with it's called but she said my levels should be around 30 and mine are in the 600's. All she did was give me steroid cream (which has RUINED my skin more with dark marks and has made it so thin) and prescribe me to plaquee (s?) but it hasn't done anything. She said there's not much more she can do. Im not sure if I should try another dr or what. 

  • Posted

    It sounds like your ANA may have been 1:640 which is clearly elevated. I'm assuming she did the other more specific levels related to autoimmune conditions such as Sjogren's Syndrome, Lupus, Scleroderma to help differentiate which one you have. 

    I find it is a good idea to get copies of all my blood test results and that way eventually I get a grasp of what levels are out of whack, what are normal and what they all mean.

    As you would already have found out there is lots of good information online about Sjogren's but you have to be selective about the sites you go to. I'm posting a couple of links to two helpful sites which are not too complicated. The first one outlines the blood findings in various autoimmune conditions. If you had a copy of your results you would be able to compare them with the examples they give. The second one is a good overview of Sjogren's and it's possible broad effects in terms of extraglandular symptoms.

    https://www.diagnose-me.com/symptoms-of/sjogrens-syndrome.php

    The other thing I wanted to say was that Plaquenil can take weeks to several months to reach its peak effectiveness, so don't give up on it too soon.

    Moderator comment: I have removed the first link(s) because it was broken. If users want this information please use the Private Message service to request the details.

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