I’ve tried this with enough different brands and forms of vitamin D (oil vs dry, with or without K2…) and was wondering if anyone noticed similar. Sometime in the next couple hours after taking D, my entire upper body will flush like a bad sunburn ; it’s the worst in my ears/arms/hands.
It’s not as dramatic as an EM flare. And I don’t even know if it is related to EM at all. Before my EM onset however, I was fine taking prescription strength vitamin D. I only take D because it is very hard for me to go outside (due to the EM).
I’ve asked a couple doctors (derm + PCP) and they don’t know why. I’ve done some googling and it seems to happen to some “normal” people as well, but can’t find an answer.
If anyone has any insight or has had this happen to them, I’d be interested. My level tends to be low but it makes me wonder whether I’m doing more harm than good by trying to supplement.
I take vitamin D regularly and don’t have this problem. Are you sure there isn’t Niacin (vitamin B3) included with the vitamin D? What you’re describing sounds a bit like a Niacin flush.
Thank you for the replies. I didn’t think it was related to my EM but just wanted to check how other ppl did. It does seem a bit like a “niacin flush” but am sure never to take niacin. The only thing I can gather is that it is dose-dependent …
Hi standing_cat, New here as I’ve just started getting EM (secondary as i have a Myeloproliferative Neoplasm), and I was on Vitamin D high dose 50,000iu every fortnight for 4 years prescribed by my Neurologist for MS. Boy did it make me flush, i thought i was going through menopause LOL - As did my Dr etc. Finally figured out it was the Vitamin D when I picked up on the flushing cycle especially at night. It wore off over the following 2 weeks and then would flare up again the day I took the next pill. So I gave up the Vitamin D. I got tested and my levels were 50 ng/l so not low at all. Not surprising after 4 years I suppose. I get lots of sun too so no surprises there either. I’m going back on the vitamin D currently, but I’m going to try a lower dose of 5,000iu every second day and so far no flushing, mind you I’ve been off it for 10 months.
Fernie!! I’m so sorry that happened to you, but I’m glad you figured out and was able to trace it back to the vit D!! Yes, I’ve tried it a couple times myself and I think something low-ish 1,000 IU / daily is ok (in a multi). I still have yet to find a reason why exactly and sort of gave up lol. I used to take the mega rx doses in my twenties (before EM) and be totally fine, but can’t tolerate those high doses now.
I hope taking aspirin is helpful for your EM?
I hope the 5,000 IU every other day will be ok for you.
Thx for sharing your experience, makes me feel like i’m not totally insane lol.
Hi standing_cat, yes the aspirin works very well, but I can’t take too much of it in case I bleed. It dulls the sensation enough to let me sleep though, so all’s well. The EM for me is on my shin on one leg only and doesn’t get very red at all, just painful especially if I’ve been exercising.
The tolerable upper intake level (UL) for vitamin D, defined as “the highest average daily intake of a nutrient that is likely to pose no risk of adverse health effects for nearly all persons in the general population,” is 4,000 IU per day for adults. The UL represents total intake from all sources. Your supplementation of a vitamin or mineral should never exceed the UL unless supplementing for a known deficiency under the care of a physician.
I’m not sure, but I think it maybe because it’s stored in fat. If you look at some of the more recent published medical papers, it’s quite a normal way of giving it in a therapeutic way by Drs. In the multiple sclerosis world this is totally normal. Virtually all MS patients here in NZ are prescribed it now. It’s a prescription only dose. I do think it is too much, for me anyway. The 5.000iu was a compromise I made with the MS nurse at our local hospital, it was hard to get but I didn’t need a prescription. They can only prescribe 50,000iu. They had never heard of anyone hot flushing with the high dose. So I was interested to hear that it happened to standing_cat too. I’m keen to get back onto a lower dose because although I’ve had MS for 10 years, I have no disability at all, and all I’ve ever taken was the Vitamin D, no other drugs. I need a happy compromise.
Thanks CarterDK, that was very interesting. i know they have been using high dose Vitamin D here for at least 8 years as my sister has MS too and she was given 50,000iu every 6 weeks back then. By the time I was given it, they had increased to fortnightly doses. Still, 10,000iu daily seems very high. I have read that you need to balance out the Vit.D with Magnesium intake with these high doses, so I will be looking into that to see if it helps me tolerate it better.
Thanks Fernie. Yeah, I had been taking good-size doses of mag for a while (~500-700 mg mag citrate / day) with no effect except for diarrhea lol. At least it didn’t make my EM worse though (as it can for some ppl)!
I’m not sure if it helped me tolerate the vit D any better, but it does make me a little uneasy when healthcare practitioners prescribe such mega doses of D without any of its cofactors?
I searched google + spent a long time going down the rathole (my specialty is to dive in headfirst lol) trying to piece together why vit D might trigger such a “body flushing” reaction, but couldn’t find anything convincing!
For a while I was using a vit D lamp (on my back), and tolerated that ok, which makes me think it was something specific about a pill formulation?
I am glad you are getting some success with the aspirin for your EM Fernie, it must be hard to deal with both EM and MS …
Hi standing_cat, yes I’m tending to agree about the pill formulation, I researched a lot too and in the end just gave it up for 10 months as my D levels were good. I must go and get another test done prior to summer. The thing that has me worried is that while i was on the Vit.D. my platelet counts stayed manageable around the 800 mark, but since stopping they have shot up to 1,100 (that’s 1,100,000 in real terms) and thats when the EM started. I’m hoping that going back on the D will reverse both the platelets and the EM. Otherwise it’s Chemo for me - Yikes.
The max amount of vitamin d the body will produce in response to sunlight (or a sun lamp, in this instance) is probably well below what you were getting in pill form. Also, blood levels likely never spike as high as they would from consuming a megadose in pill form.
Thx carterdk. Yeah, that was my hypothesis going into the vit D lamp – levels wouldn’t be fluctuating quite so much so I’d be able to tolerate it better.