HELLO!

Hi! I am new to this forum (although a member of 3 others!) I have ltd scleroderma (particularly raynauds, calcinosis, GERD and talangwotsits) I also have hypothyroidism, Secondary Sjogrens and Primary Biliary cirrhosis, Vit D deficiency yaddad yaddah yaddah!!

The main worry i have is declining lung function tests, my DLCO has declined to 60% and i have 'ground glass' appearance in my CT scan. Anyone else have this/heading this way? Prob nothing to worry about but these autoimmune conditions have a way of sneaking up on you!

Cheers me dears!

5 Replies

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  • They certainly do...& you seem to have more than your fair share!

    I'm really sorry to hear about lung deterioration. At the moment I don't have that problem so can only sympathise rather than relate.( But def. relate to the Sjogren's.)

    It does sound as though someone is keeping an eye on you & that's so important. Have you got a good rheumatologist?

    I'm really glad you've included this forum on your list. Great to have someone else joining in!

    Keep us updated.

  • I think most people with Scleroderma are on the raynauds/scleroderma healthunlocked, i only found this by chance! I havent actually had very good recent care, my rheumatologist keeps doing tests on me but not following it up! She completely missed my hypothyroidism and i went for ages feeling unwell. I,ve now been re-referred to Leeds so am hoping for some better care there!

  • Hi! Welcome and nice to meet you ;) I can sympathise with the Raynauds and GERD. Yes, I agree, these autoimmune things do seem to have a bit of a mind of their own sometimes and can be quite random in how they affect people. Hope it goes well at Leeds ;)

  • I really hope your treatment is better back at Leeds & you don't have to wait long for an appointment. They seem to have a good rheumatology department & I think there is research into scleroderma going on there. Good luck.

  • Thanks all!

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