I came across this article in my Medscape feed, it's the professional version so may be behind a subscription/qualification wall.
medscape.com/viewarticle/96...
Essentially the study has shown a link between Vitamin D supplementation and cutting the risk for auto-immune disease, PMR actually gets a mention! I'm wondering if such supplementation may also cut the risk of flares. If members are unable to read this I'll try and do a cut and paste of salient sections.
I take Vit d and still get flares. However I would say that just before diagnosis of PMR I was diagnosed with Vit d deficiency
The study suggests that it is longterm use of vit D that reduces the risk of developing autoimmune disorders - so started many years earlier. To be honest, I'm not sure it is supplementation that does the job - but that some people are deficient and others aren't and that has an effect longterm on their immune system.
I take 4000 IU vit D and was given enough originally to get me to a replete status first of all. If I don't take that much the blood level falls slowly. But it doesn't appear to stop anything over a long period. I have a form of PMR that never really goes away and then flares every few years sending me back to 15mg and more at times.
Yes, sadly, many of us found out we were deficient in Vit D after we were diagnosed with an autoimmune disorder. However, I do believe getting my vitamin D on the high end of normal has decreased my flu and cold occurrences. This of course is factoring in a year of lockdown.
Can you speak to this: I take CalcichewD3 but have no idea ‘how much‘ Vit D each tablet contains - I just take as prescribed like a good boy. So what if I add another Vit D supplement, what happens if I take too much by doing so - does the body flush the excess or can it be detrimental to my health?
Calcichew has 400 IU vit D per tablet, it is the second amount given on the box - a very low daily amount even at 800 IU in 2 tablets. I take 4000 IU per day. You just adjust the amount you take as a further supplement.
Vit D is fat soluble so stored in the body and not excreted, just used up. Very high levels can be detrimental - but you would need to be taking the sort of doses that are used short term to boost blood vit D levels. It is safe to take 50,000 IU a week for a few months but not on a permanent basis.
Thank you! I knew you would know the answer! I forgot to mention the CalcichewD3 I’m prescribed comes in plain brown plastic bottles without any indication of composition, either calcium or Vit D. Just states CalcichewD3 x 56 being one month’s supply (28 days). Looks as I’m in deficit regarding D so I’ll up the level. Thanks once again.
They should have the dose on the label - poor dispensing if not. Though you only have to google any supplement to get the composition.
That is the pro answer I get from this site.
I think rheumatologists are worthless but folks with the disease are much better informed
I have been taking D3 since the plandemic
I got PMR sane time my wife got Covid. Maybe my dosage was too low. What dosages were recommended?
The "vit D reduces the risk of a/i disease" applied for having taken vit D longterm - at least 5 years if I remember rightly and possibly longer.
Yes but the amount best for folks with PMR is the magic number I am seeking.
To little…..nada
To much….problems
I am doing 5000iu daily, pure speculation but I think there is a sweet spot
I doubt anyone has the slightest idea.
Maybe we all should get more scientific?
Calendar with what we each are taking everyday supplement and prednisone-wise
Pain levels 1-5
Not sure what a flare up is, I hurt all the time but when I can’t move or get off and on toilet, I would call that a P5
1P is no pain, you can go kayaking
3/30/20 10mg, 5000iu, Ashwaganda 4200mg, P3
That I will post at the beginning of a daily post
Everyone is different - in their PMR (and there are probably a few different varieties of that), their reponse to any given medication and their vit D needs. Some aren't depleted even without supplements. What making sure your vit D level is good achieves is ruling depletion out as a cause of your aches and pains. They can be identical to PMR symptoms.
Also, Vitamin D is important in binding Calcium, aiding in preventing osteoporosis.
Thanks for the article Mack, it was also a good reminder to push omega 3 food’s which are supposedly anti inflammatory. Here is a partial list if anyone is interested.eatthis.com/omega-3-foods/
Not sure caviar is on most peoples shopping list -but can probably manage most of the rest! 😊
😂 I’ve never tasted it!! Have you tried natto, fermted soy beans? The texture looks awful. Supposed to be good for you though.
Natto -no, never appealed to me. Nor oysters. Have had caviar though..on few occasions so not exactly a connoisseur 😉
Had a very bad experience with oysters when sailing at the North Brittany Coast, never had any since. The only thing they would have done is lose me a lot of weight!!!!!
Just the thought of them makes me baulk!
I'm not prepared to mention what they did to me!!!
I've had natto - not that I remember much of an impression. I like kimchi and some of the other fermented things you get in Korea. Keep trying to tell myself to make some ... Trouble is - when you are in Korea or China eating where the locals eat you don't really know what you are eating!
True! Probably just as well….sometimes 😳
I did identify certain chicken delicacies - and avoided them! Ranked alongside pigs' trotters ...
Thanks for that. However, I'm somewhat confused, as someone else posted an article a little while ago that said it really has to be marine omega3 because of the 'long chains of fats'. I guess any is better than none!
Not necessarily - omega 3s aren't always beneficial! They can make arrythmias worse for example - I discovered that after my rheumy was suggesting them for me ...
Doh! How did you nail the culprit?
I did my homework! And found a research paper about omega 3s and cardiac problems.
Can you possibly dig this article out for me.?
Wasn't this article I saw originally - but it is a review of 4 studies:
jamanetwork.com/journals/ja...
Google "omega 3 atrial fibrillation" and you will get a load of articles from last October
Not sure if this
webmd.com/heart-disease/atr...
is about the same studies - mentions 5 so maybe plus 1.
I was able to read the article. I do take daily vitamin D and blood levels are measured together with othe parameters every 3 months.
This is interesting, I had some skin issues so started taking a good quality Vit D along side probiotics supplement and omega oils day.Also for the last 2 weeks been on a very low carb diet, less than 50g a day and only eat within an 8 hour window which I then have a 16 hour fast, doesn’t always work out.
Before this I was in so much pain especially with my arms, difficultly getting dressed etc
I’m down to 2mg pain free.
Not sure if any of this is just a coincidence but it’s been fast a quite dramatic.
Vit D I have been taking for a good 4 months
Many thanks
Vitamin D and Fatigue
Another auto immune condition: Lichen sclerosus
Vitamin D Supplements and Health
