Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Been a while new info! Vitamin d and not as!!!?

Hello there DeniD and thanks for the follow up.

If you are referring to 1 from India here at Kickas, yes I do recall one individual here from India that used supplementing and sunshine to treat a vitamin D deficiency that he believed led to his issues.

Thanks for the info and food for thought.

Tim

Hi Molly l guess I will have to see the vitamin d out now I dont think uk docs listen bout the chest.... That's my worst place!!! I don't want them to blame everything on to vitamin d deficency mines 7.5!!! Will see what happens but I think l need to know more about what to look for in chest to get a picture and some knowledge to back me up! X

Your welcome xxx

Go to the ASAS Handbook - EULAR - on the spondy research forum here on KA - all the info you need is on the research site.

My D was borderline low (30) so my endocrinologist supplemented me with prescription 50,000 IU weekly for awhile, got it up into the 50s or 60s.

Then it became available in higher and higher strengths OTC, so I started with 5,000 daily (plus another 2,000 from my Calcium pills)….my D went down with that amount……

But have found it stays in the 60-80 range with 10,000 IU daily.

Yes, I need that much to keep it up. Some of my doctors were shocked by that amount that I take and scolded me for it, but last week, it was 68, and so my GP and I decided "if that's what it takes, that's what it takes."

I'm not sure if its the bowel issues that don't allow its proper absorption or if its my liver not allowing its proper conversion.

Did notice that when I had severe bowel issues where I didn't digest my food properly for about a month that it dropped from the 60s to the 30s during that time.

Did have NAFLD, but pravastatin fixed it. Will be interesting to see if I need less D now?

Unfortunately, fixing my D, did not fix any symptoms that I am aware of? But figured it couldn't hurt and might help. Maybe its helping my bones?

Hope for you, with yours being so much lower than mine, that if you fix your D, other things will improve.

My blood work and radiologic scans never showed much; that's not how I was dx'ed. I was dx'ed by my symptoms: GI inflammation, neck and SI inflammation, enthesitis, psoriasis, dry eyes, mouth sores, rashes.

Thanks everyone will keep you all updated would be nice. To think my symptoms can be cured!....... I'm 5 weeks into vitamin d replacement and feel rotten! Enjoy rest if the weekend x

Thanks but I'm having trouble finding that in research forum x

It's right back at the very beginning - yes,, I am also having difficulties in finding pp1 on that forum, think it is on pp2 or pp3. Can get to pp25, but not further back than that. Maddening !

So, google it up - http://www.asas-group.org/research/publications/asas_improvement_criteria.pdf

http://www.asas-group.org/education/ASAS-handbook.pdf

http://ard.bmj.com/

But still not leading me to THE exact paper I want...sigh !

Bit more -
http://ard.bmj.com/content/68/Suppl_2/ii1.abstract

Scroll down for more papers. The whole format seems to have changed and also 'looks' like they want one to purchase the whole book ! Hmmmmmm. Expensive, though would not mind having it in my library...

Another -
https://www.vumc.nl/afdelingen-themas/41463/27797/2089686/6698193/7249072/Literatuur1.pdf

Another -
http://www.clinexprheumatol.org/article.asp?a=3713

I found putting in a search under Dougados - ASAS/EULAR Handbook produced a mile of references. Then a matter of shooting through them - trying to find those, A. relevant and B. Free... The whole handbook 'was once' free, but no longer.

OK. Going to leave this with you now -

My Fit D was extremely low too, and when I first found out I was excited to think that was the cause of my problems. My doc put me on prescription strength to jump start things, but it did nothing for my pain, in fact for whatever reason vitamin D seems to increase it.

Need to take your Vit-D supplement 'with' a fat : like butter, or fatty meat, or coconut oil. Is a fat-soluble vitamin Needs the fat to be correctly absorbed. Also, suggest adding in Magnesium and Omega 3 (NOT Omega 6) see other cofactors :-
http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

Vit-D readings should be in the 40 - 80 ng/mL range - this is still strongly discussed. The Vit-D Council advocates the 40 - 80 whereas the NIH considers 30 as 'good'. Ho-Hum.

Suggest reading through this website - good information :-
http://www.vitamindcouncil.org/about-vitamin-d/how-do-i-get-the-vitamin-d-my-body-needs/

Hope this helps -