December 5, 2021
my story:
by SusanI am taking between 60,000 iu to 140,000 IU daily for the last 2+ years, without remission of Sjogren’s syndrome and neuropathies (small fiber) that go with it. My skin diseases (hidradentitis suppurativa / acne inversa) and seborrheic dermatitis on my scalp hasn’t cleared either. Rosacea as well. Seems like vitamin D helps, it reduces my disease activity, but nothing like a miracle promised. After 1 year on 140.000 IU, i started to have very severe pains, it started with the menstrual cycle (and actually my Sjogrens onset was from the hormonal shot so this is big factor), – and since then I couldn’t tolerate high dose. For months on/off took me long to figure out high dose makes my pain unbearable. When i stopped for 2+ months pain was gone, i still have other symptoms as the pain was never dominant but neuropathy making my mobility limited, fatigue, headache, parotid pains 247 , sticky saliva… – but the pain added to muscles (i think fibromyalgia or even worse) from D, reduces when I don’t consume massive doses.
I tried on and off 10 times.
i took also magnesium every few hours, the only brand that helped me, ionic magnesium good state – which helped extremely with many sympotms that got worse from D, mental symptoms, neuropathy reversed partially etc. but also, nothing close to remission.
my disease still active.
boron and zinc picolinate, B2, have no benefits that i am aware of.
i will continue to dose higher as I know it’s a factor for autoimmune, in my case quite big,, but it cant cure it , and so far I know it works for about 10% rhuematic patients in Europe. Number seems to be higher in Brasil so I am contemplating it might be linked to hispanic/black vs white skin color, or they’re simply lying.
Seems like Coimbra got it wrong in many ways and the dose shouldn’t be determined by the PTH only as it might exacerbate autoimmunity if too high, I do need genetally 50,000-80,000 iu but probably after a year or 2 also less, hard to know now my ideal dose when i stopped tolerating 140.000 IU abruptly after full year.
i am still searching, 30-40,000 iu seem to make no issues.
But this treatment is nothing like promised.
forgot to note, in 20 years of my small fiber Neuropathy, i never had acute attack. It is non progressive or slowly progressive.
Only occassion when i had a attack very very severe that i never recovered from, was after 6+ months of 60.000-80.000 IU.
I am absolutely sure vitamin D in this moment it was very short attack, provoked immunity.
I Got 10 New symptoms..very severe leg arms weakness, pains, loss od sensatiin, hair, and worsening of POTS. New onset dizziness, fainting.
Supplementing magnesium later helped maybe 20-30% reverse this damage, but did not fully reverse it. I have nerve loss.
So overall high dose vitamin D can ne dangerous too.