Primary Sjogren's and lung disease - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Primary Sjogren's and lung disease

LaceEdwards profile image
4 Replies

Hello everyone,

I was diagnosed with Sjogren's in 2001 when I was 33 (but was disagnosed with dry eyes when I was 18). Along with the dry eyes and mouth, it has also affected my lungs to the point where I now have 35% lung capacity. I had read somewhere that this is not atypical with primary Sjogren's and was wondering if any others out there suffered similarly? I take a range of supplements and have just been introduced to Silicea and was also wondering if there were any views on the helpfulness of taking this substance from a connective tissue standpoint?

My daughter was born through IVF and prior to commencement of the process, I had to be tested to ensure I was not a carrier of the Sjogren's gene, which fortunately I wasn't as we would not have been able to proceed. Immediately, post-pregnancy my lung function dropped by 15%. Good news is I've been stable at 35% for the last 8 years and put this down to Symbicort, vitamin D and iron, although none of these have been medically proven to be helping, I just "feel" they are! :-D

I am thrilled to find out today that this Association exists.

Take care....

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LaceEdwards
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4 Replies
Beverly profile image
Beverly

I don't know wether you are in Australia or the UK but if you can find someone that does Photonic Laser Therapy rejuvelaserclinic.com/Histo... this helped with increasing my lung capacity

Sparra profile image
Sparra

I have lung involvement have chronic lungs that grow all sorts of infections have had Sjorens for 20+ years liver joints etc but lungs for 4 years I am on pred Imuran and ursofalk would love something that helps with lungs

Jlog profile image
Jlog

Sorry if this is a silly question but what causes the lungs to be affected in Sjogren's (I'm guessing it is lack of moisture production reducing the protective fluids in the lungs and therefore infection getting in, am I on the right track?)

Sparra profile image
Sparra

Yes that's it in a nut shell

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