I have SSc (Scleroderma)/Reynauds/Pulmonary Fibrosis/Inflamatory Arthritis. And other stuff!. 2010 diagnosis.
The stuff on the web address below is hard reading, but Vitamin D is so important to help you with our conditions.
ncbi.nlm.nih.gov/pmc/articl....
Please read this, it is important
John
Thanks very much for posting that! My wife had stopped taking VitD as she thought it would boost the immune system which is not what we want, and it is good to learn that it is an immunoregulator. But does anyone know, is it any use taking the RDA of VitD, actually? The paper doesn't come to any conclusion as to what patients should take, unless I missed it.
I wasn't sure about posting this, so thank you for your reply. Sometimes we can feel very alone ( even as a couple ) with our medical problems. The main Rheumatology hospital I attend started recommending this because of my personal trials with VitD3, previously I was given the usual heavy duty medicines ; with massive side effects. It is unfortunate that most online information regarding VitD3 is mainly dominated by " know all, know nothings". VitD3 is vital and does not compromise the immune system. But if you look at the end of the post it is about the ILD , which I was diagnosed with in 2018 and was given 18 months to live in November 2019; because of my ILD diagnosis. We are all different in our outcomes, even with the same diagnosis. This is my story, I hope it helps someone.
Just want to add that I stopped taking an immunosupresant 6 months ago, after 4 chest infection ,2 sinus infections 2 teeth removed; and a year without sitting in the sunshine. Could get skin cancer?. We do have to have a life after all. This year I'm taking control again. I'm here because of "my" decisions. 2 days ago my new GP gave me a 20 minute appointment. Unheard of round here. We went over my stuff and he agreed that I'd helped myself to be here now.
Wonderful that you have defied the odds! What were you on? My wife has ILD and is on Mycophenolate Mofetil which was rescribed 4 months ago. It is supposed to work 1-4 months in but all she feels are very heavy side-effects including insomnia (never had it in her life before) and worse chest pains/chest tightness than before. Some alleviation of coughing on the plus side.
`'Usual vitamin D supplementation does not correct vitamin D deficiency in scleroderma patients`` is how it concludes, so I would be interested to know what dosage you are taking....
Scleroderma ( ssc) with ILD is pretty much the end of the game " if you have low VitD3 ". It says that in the synopsis. I read it thoroughly and would not have done my post if I hadn't thought this was important. This is not about Scleroderma. This is about the irrefutable fact that 93% of Scleroderma patients will get ILD if they do not have high value counts of VitD3. And ILD is the number one killer of us with this condition. I now wish I had not done this post. The information is out there. Make of it what you wish.
It`s interesting reading my last post. I didn`t expect to live long enough to re-read it. 8 years after being diagnosed with PF; I`m now on Nintedanib for my "Scleroderma" (Systemic Sclerosis with Primary Sjogrens syndrome) caused; PF. Whatever you read on the Internet ( Iv`e followed it for 15 years and it was death in 6 weeks when I was diagnosed then?) with Scleroderma . We are all so different. Do your homework. One of my Consultants sent a letter to my GP ( I always get copied in) and she told him I was an expert of my condition. Make sure you are too.
Your proactive survival story is inspiring! My wife does have SSL with ILD but we specifically pushed with the useless hospital where the consultant rheumatologist has still not seen her after 10 months (is this grounds for a complaint?) but at least the respiratory consultant conducted blood tests for VitD at our request and the levels are fine, thank God. Micophenolate is what they put her on, not Nintenib. No further lung fibrosis after 1 yr. Not sure what this means given what you wrote above on VitD deficiency.
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