ILD

Posted , 4 users are following.

I haven't been involved in the discussions for a while, I was arrogant enough to believe that I was the one that would conquer SS, I didnt suffer the way most of you did, my pain was under control, the dryness was bearable and cured by drops and lotions. I smugly advised you all to take an assortment of vitamins that miraculously restored you to good health. I was so wrong and stupid and nieve. Ive just been diagnosed with ILD. 11% of those of us with SS will develop this and its fatal in most cases, I have 3 to 5 years. I had never heard of it till today, even on this forum no one ever mentioned it, or did I just miss it?

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4 Replies

  • Posted

    I'm sorry for your diagnosis Brenda. What is ILD?

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  • Posted

    I am so sorry for your diagnosis Brenda. So much sympathy. This is why it is so important that people are properly diagnosed with these kind of 'hidden' auto immune disorders that so many doctors don't seem to understand or be well enough informed about. They can cause such serious issues for us. I am not sure what your treatment options are. I assume they have discussed that with you. I really wish you the best. There are very good closed help groups on facebook where you may find others who suffer the same conditions and provide a mutual support and space to discuss your illness. All the best to you.

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    • Posted

      Im so angry and I hope I stay that way because then I have no room for fear. it's so true Margret about Doctors not recognizing SS and the damage it can do , I had a chest xrays about 4 years ago and I was told I had mild emphazema I questioned it at the time as I have never smoked but nothing was done. It's my fault to because I didnt educate myself enough about the condition .

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  • Posted

    So sorry to hear you now have interstitial lung disease, Brenda. That must be a terrible blow.

    All I can advise is that you try and research your condition as much as possible - and don't give up entirely on alternative therapies. (But do keep your doctors informed of everything you're taking.) Also, have you had a second opinion? Doctors do occasionally misinterpret X-rays and scans.

    I understand that this can happen as a consequence of certain autoimmune diseases, though it's quite rare. All the literature I've read suggests that it's most likely to arise from scleroderma or systemic lupus erythematosus, both of which are in the same connective-tissue group of autoimmune diseases as Sjogren's.

    I suspect there's more of an overlap between these three AI diseases than medical opinion will usually admit. Things often aren't as simple as doctors make them out. My excellent GP finally admitted this when he and I were trying to make sense of my most recent blood test. I have a diagnosis of Sjogren's, based largely on symptoms and an intermittent positive SSA on blood tests, but my latest tests gave no indication of this at all - just the perfect immune picture for SLE. The puzzle is that I have no physical signs of SLE, and never have had, and my renal function - usually an early casualty of SLE - is perfect!

    Please don't give up hope. A positive attitude can often keep an overactive immune system in check. And please do that research too - including a few alternative sites. But I'd advise avoiding any draconian diets. Making yourself miserable is no way to be kind to your immune system. And do stay in touch with us on this forum.

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