I was diagnosed with PMR 3 months ago. All a bit of a learning curve!! Are there any vitamins or supplements that I should be taking?

[Hollyberry12]

I’m finding all your information so helpful.

[piglette]

I am so sorry you have been diagnosed with PMR. I assume your doctor has prescribed vitamin D with calcium?

[Hollyberry12 in reply to piglette]

Yes. Just wondered if I should be taking any vitamins that would be helpful

[piglette in reply to Hollyberry12]

I personally try and get my vitamins from my food unless they have been particularly prescribed. For example I use turmeric a lot.

[Hollyberry12 in reply to piglette]

Thank you, I will try turmeric.

[piglette in reply to Hollyberry12]

Cherry juice is supposed to help. Must be Montmorency cherries though. I love it, but it is expensive. I have an app which compares your vitamin intake to what the recommended amount should be. It is called MyNetDiary. It is free for basic calories and vitamins, but I upgraded so I can analyse more vitamins. I became a nutrition nerd when I first was diagnosed with PMR and gave up gluten and simple carbs as I had heard that would stop me getting a moon face from pred. It did actually work, but it may just have been luck. I read somewhere that nearly ninety per cent of money spent on supplements is a total waste of money, it just puts cash into the coffers of the suppliers. Some supplements can actually be dangerous, particularly some of the Chinese offerings. Supplements do not have to prove they are OK, unlike medicines which go through rigorous tests. It is much better to eat a balanced diet.

[Hollyberry12 in reply to piglette]

Thank you I’ll look it up

[-LJ-]

Don’t have time for all the reasons why, but I got them all here so you can look them all up. Had pmr for 2 years, now off pred for 2 years. I still take these every day! Magnesium, D3, zinc, methyl b12, K2 MK-7.

[Hollyberry12 in reply to -LJ-]

Thank you for the information. Just feel I want to take as much as I can to help in this strange situation.

[DorsetLady PMRGCAuk volunteer]

Vit K2 helps with the absorption of Calcium in supplement prescribed by doctor.

Some take Magnesium because you may get leg cramps.

But check with GP okay with any other meds you may take - and also that your VitD/Calcium tablet shouldn’t be taken same time as Pred.

There are plenty of previous discussions if you type in vitamins or supplements into search box.

[Hollyberry12 in reply to DorsetLady]

Thank you so much for that, it’s all been really helpful.

[Snnib in reply to DorsetLady]

Why shouldn't vit D /calcium be taken at same time as pred. Never been told this. Please can you let me know why been taking mine together for last 18 months. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Snnib]

Calcium interferes with the absorption of Pred...quote from PMRpro to previous question -

“Calcium and pred interfere with each other - it is thought that calcium coats the pred tablets and stops absorption but there may be other mechanisms. However, by taking the pred and leaving it a couple of hours before taking the calcium you get the best of both. Pred for breakfast, calcium for lunch and tea (having some fat present, not a lot but some, helps absorb the calcium better.”

Why you’ve been taking it for last 18 months is because no-one has told you not to I guess.

Some Drs don’t know all the facts about prescribed medication interactions, let alone supplements. Best bet is to check with pharmacist.

[Snnib in reply to DorsetLady]

Thankyou vit d with lunch from now on. Always helpful.

[piglette in reply to Snnib]

My pharmacy has actually written on the packet to leave at least two hours between taking pred and vit D/calcium.

[PMRpro Ambassador]

In the case of many supplements, more is not always better, too much of some is as bad as too little. The best source of most things is a good diet and naturally available vitamins seem to work better than the chemical variety. Some vitamins are water soluble - so if you take too much it goes straight out in the urine (vit C and B vits in particular, putting your money in the pockets of the manufacturer and literally down the drain! Others are fat soluble and if you take large amounts of them they are stored in body fat and can get to very high levels.

Vit D is not often found in food so if you are low it probably means you aren't making it in the skin from the action of sunlight and you need a supplement. The amount in the calcium/vit D supplements isn't really enough if you are low but don't up the calcium supplement as too much calcium isn't good. Get a decent just vit D supplement to take as well. Try to avoid taking more than 600mg calcium at one time, the body won't absorb more than about that at one go.

Vit K2 is good for bones, so is magnesium and magnesium is also good if you develop muscle cramps as a result of taking pred which is quite common.

Otherwise - there really probably isn't much that will achieve a lot. Many people find cooking with turmeric and garlic helps. You can take them as supplements unless you are on certain medications - but the doses are a lot higher and can cause GI upsets.

[Hollyberry12 in reply to PMRpro]

Thank you so much for all that information and your time. I do have a balanced diet, and use quite a lot of turmeric and garlic in cooking, but will definitely add magnesium and K2. Thanks again

[Papapaul28]

I take lots of anti inflammatory things but I’m still not convinced they are anything other than snake oil as very difficult to gauge affectiveness. I take turmeric, Manuka honey 640MGO, garlic capsules, pure cherry juice amongst other things. We eat lots of vegetables and salad plus fish, both oily and white eg monkfish and halibut. I’m thinking of dropping the supplements because they are expensive and I’m not sure I’m able to get an adequate dosage from the sources used. I will however focus on diet more than supplements in the future. Good luck.

[Hollyberry12 in reply to Papapaul28]

Thank you so much for your thoughts. Maybe a healthy diet is the way to go, with the old vitamin thrown in. This is all very new to me, so the advice and information that all you lovely people have taken the time to give me is very much appreciated.

[Pr0jection]

I'm taking Calcium and Vit D, Magnesium and Vit B complex, both recommended by GP and Rheumatologist. Also biotin to try to avoid hair thinning/loss. Have also been taking garlic, Omega 3, glucosamine/chondroitin for several years.

[Hollyberry12 in reply to Pr0jection]

Thank you so much for the information. It’s all really helpful.

[NickWarwick]

Interesting thread (they often are !)

I was struck by the suggestion that taking pred and other pills at the same time is a bad idea. Thats news to me i have to say.

I would have to check but i am pretty sure i was told to take the pred and calcium at the same time. I think it is on the repeat prescription advice as well.

So my regime is

10mg pred and one Evacal D3 tablet at bedtime.

5mg pred, one D3 tablet and one Lansoprazole tablet when i wake up and just before breakfast.

I am guessing thats not going to be greeted with universal approval ?

[PMRpro Ambassador in reply to NickWarwick]

It is only calcium that shouldn't be taken at the same time as pred - so all fine except pred and Evercal together for bed! Just take the Evercal with dinner - which is better anyway. And any pharmacist who wrote to take them at the same time needs a bit of education!

[Alchemy8]

i have been taking spray turmeric and Vit D with K2. You spray into the mouth and onto the cheeks so the take up is more directly into the blood stream. I also take a liquid magnesium as it is more easily assimilable.

[Hollyberry12 in reply to Alchemy8]

That sounds interesting. Thank you