Vitamin D and PBC

[tonia17]

Some info I found on the role of vitamin D and PBC

hindawi.com/journals/grp/20...

[4pjx__]

Thank you! Looks like we would need a prescription for this. Are you personally using this?

Pam

[tonia17 in reply to 4pjx__]

I was on prescription strength when my levels was taken at 20 but then it went up to 43 and they took me off. I’ve been taking 2000iu over the counter daily and just had my level checked again and it’s down to 40...I can feel the difference when I’m on prescription strength and going to push for another prescription.

[4pjx__ in reply to tonia17]

Interesting.... what kind of difference do you feel? I if you don't mind my asking....I am just trying to figure out if I need some of that too. Thanks so much for the information.

Pam

[tonia17 in reply to 4pjx__]

It’s really odd...I do have less fatigue but it’s like my motivation is back when I take it...I tell my boyfriend it’s like I found my “get up and go” feeling....

[4pjx__ in reply to tonia17]

Well, that's encouraging! 😀

[Hidden in reply to tonia17]

Hi Tonia, Thanks for your post, and please can you tell us the name of your prescription vit D and do you have any gastro side effects from taking it? I stopped taking alfacalcidol caps because of stomach cramps at a time when I wasn't willing to cope with any more difficulties in that area.

Best wishes

[tonia17 in reply to Hidden]

I looked and can’t find anywhere on my portal about the kind of D I was prescribed...I do know it was the 50,000 take 1 a week little blue/green capsule...

As far as gastro side effects all I can recommend is take right after a meal..this helped me greatly...

[Hidden in reply to tonia17]

Thank you Tonia. Sorry for not thanking you straight away. I've been having intraoral spray lately, (and do that after a meal too). Blood tests show improvement from deficient to optimal. But like you said, it really makes a big difference, for me like the sun is shining again after a long time in the dark.

[Dotyy]

Thanks so much for posting this article hugely interesting. I’ve had Pbc 18 years, I was transplanted for it in 2010. It’s now reaccured in the new graft. I have osteoporosis and recently diagnosed with cervical ankylising spondylitis a massive problem with pain. I find it interesting that you mention your feelings of motivation are returning with vitamin D. I too noticed a change in my mood for the better. In my sceptical mind in the past I thought this was some kind of placebo effect at work. However having stopped and started it from time to time I do think it has a positive effect. I hope it continues to help you and thanks again for your very interesting post. Lorna.

[Hidden]

I take a maintenance dose now, after being on a higher dose for deficiency, Ive been taking it for a few years. I can tell the difference if I don’t take it. I left it out for a while thinking it would be okay however, my numbers did begin to drop. Iam lucky I get mine on prescription so it’s free to me. I read the attached 2018 review paper, you may also find interesting, there’s a section on pbc at paragraph 8.1.

ncbi.nlm.nih.gov/pmc/articl...

[butterflyEi]

Useful information although I must confess to finding it a bit beyond me so I glossed over some of it and then scrolled through to conclusions.

A couple of years ago I took the opportunity to have my vitamin D levels tested and they were only just moderate after a winter sunshine holiday. I started taking a vitamin D + K spray but I am going to check whether it is the optimal one as in conclusions they suggest that the best form of vitamin D for use in the treatment of PBC is calcitriol because of the active form of vitamin D3.

thank you for the share

[Donnak2641]

I take 8000 outs a day. 2000 is not enough as we have malabsorption problems. Mine is at 60- optimal needs to be at 80-100. Viamin D is a hormone and you will feel better and less fatigued when on a proper dosage.

[tonia17 in reply to Donnak2641]

Thank you for your reply! I do realize we have probs absorbing fat soulable vitamins like D... I totally agree it makes me feel better...id love to share your optimal levels for PBC patients at 80-100...do you have anything you can link or share so I can pass it onto my doctor? She is keeping me at 2000iu a day as of yesterday...

[Lawyers]

Is this an old article?? They are calling PBC using the word chirossis. There have been new updates on vitamin. D and absorption issues. Has any checked with PBC or their doctors about this?

[tonia17 in reply to Lawyers]

I have Kaiser for my insurance...they STILL put cirrhosis on EVERYTHING...I’ve pitched a fit ALL YEAR...wrote to admins...they won’t budge...🙄🙄

[Lawyers in reply to tonia17]

That is crazy. I hate insurance companies.

[Lawyers]

PBC Foundation. Sorry.

[GrittyReads in reply to Lawyers]

The paper was published in 2012-13, so about 5 years old. However, some of the answers above do suggest more recent 'research' mentions, so have a read of those. Even if this has been accepted and has filtered down to some of the leading PBC consultants, I imagine it's unlikely to have reached GPs. However, vit D is generally important in anyone with PBC, as absorption of Vit D is impaired by PBC. So if this paper suggests the best form to take (calcitrol) then it looks to be something that, maybe, the PBC Foundation can check out, for us - if they have not already. I will check with my GP when I see her soon

Cheers, Gritty

[tonia17 in reply to GrittyReads]

I either print or supply a link to the studies I want my gastro to read...prefer print busy most times we communicate thru the portal so a link is all I can do...please share their feedback! 😀

[Sona_akb]

Very interesting 👏🏻👏🏻 Thank you for sharing. I just looked on my vitD pearls, they’re cholecalciferol not calcitteriol. Maybe i must change it

[liver-bird]

Thanks for this Tonia. I have long suspected that my mild PBC symptoms may be because I take calcium and vitamin D each day to treat osteoporosis. This report bears that out and is very interesting. ☺☺

[Sona_akb]

I just searched, The name calcitriol is for the drug Rocaltrol.

[Hidden]

Thanks for your reply tonia. It may be that prescribing calcitrol requires a greater level of monitoring in the patient because of the potential risks in rise in calcium levels?

It maybe a question to ask the person who treats us individually I guess as one size (like leggings!) never fits all no matter what hopes we have! It's good that we are awake to finding something that works better for us though. And really helpful and encouraging that people share their findings with us. Best wishes

[Jlruggie]

Keep em comin, looks like valid research to support non prescription treatment. The other I’m hearing is gluten free, no additives, no refined sugar, no alcohol, no extra salt, no meat diet. Thank you!

Jlruggie

[tonia17]

I’ve tried really hard to follow that...cut land based meats—alcohol out—-Tylenol out—sodas and all carbonated drinks out—high fructose corn syrup out—additives out—-working on the sugar—and personal hygiene/cleaning products

[mthender]

Thanks for sharing !! I do take vitamin D but I will look for this particular brand. We need it more than ever especially with the winter blahs upon us!!

[tonia17]

Just want to add to this...I started taking my D at night with my Urso and I have finally had success at sleeping thru the night!

Also, I usually eat a small snack with my last dose of Urso and have read that D is better absorbed with some fat...now considering PBC I’m not so sure how this works for us but Ive switched my snack to one of the following...

a half of avacado, handful of nuts, small glass of milk or take the easy out and a half teaspoon of peanut butter...lol.

“Ingestion of fat stimulates the secretion of bile and promotes the formation of micelles, small structures which transport the fat and vitamin D to the gut absorptive surface, thereby promoting their absorption.”