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I started on minocycline almost a month ago, I’ve noticed improvements in my raynauds, ive had days where my hands are warm all day long, which is rare post my SD CREST diagnosis. The symptoms that still bother me are the calcinosis in my fingers, fatigue and mouth/lip involvement. Has there been anyone on Roadback thats seen their calcinosis gone with AP therapy. So far so good, but as I’ve read, this is a slow therapy for most although there’s also some hyper responders.
Hi Drey,
Yes, if you go to this past discussion thread, you will find a forum user, JustDiagnosedChris, who mentions pretty early improvements in finger calcinosis:
It is easy to search past discussions on various topics. Just type “calcinosis” in the search box on the top of discussion forum page and click to search. Everything with that key term in past discussions will appear for you to browse.
How did your initial appt go with Dr. F? Good to hear you’re experiencing less Raynaud’s! It’s still very early days so hang in there.
Initially I was diagnosed with CREST in 2019, ANA came out positive and physical symptoms of raynauds and calcinosis were evident. Fast forward to 2023 i went in to see Dr. F and now all my blood work shows everything to be normal despite having worsened calcinosis in my hands and some skin involvement in my body brought on by my auto immune condition. He didn’t prescribe me with minocycline, so I had to get it through my dermatologist.
Hi Drey,
Are you taking vitamin D? If so, how much are you taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Drey,
Do you take that much vitamin D every day, or just once a week?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Drey,
Both of those doses are very high. If you take too much vitamin D, and “too much” is not the same for everyone, that can result in soft tissue calcification.
I was poisoned by taking only 2200 I.U. of vitamin D per day. This happened over time, and was not from a single dose, so the toxic effects actually began at a lower dose. I started at 200 I.U. per day and gradually increased my dose over time (several years). It wasn’t until I reached 2200 I.U. per day that I realized that there was a problem. With some experimentation, I determined that 500 to 600 I.U. of vitamin D is the maximum dose that I can take without running into problems. Any more than that and I experience unpleasant side effects. Because of this, I now take 400 I.U. of vitamin D per day.
I recommend reading this:
Press release – Vitamin D may exacerbate autoimmune disease
https://mpkb.org/home/arf/040909After reading that, if you’re interested in learning more, this web page has more detailed information:
Science behind vitamin D
https://mpkb.org/home/pathogenesis/vitamindPhil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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