Supplements

[PhilFreeToAsk]

Has anyone used supplements to compliment medical treatment for PMR? I am considering Evening Primrose Oil alongside steroids.

[DorsetLady PMRGCAuk volunteer]

Hi,

Like other supplements it may help with add ons to PMR/Pred, but won’t do much for the illness itself, and should be checked for any interaction with your medication.

Found this - from an independent source -

“Evening primrose (Oenothera biennis) is a plant native to the Americas.

Its yellow flowers open at sunset.

The oil in its seeds contains omega-6 fatty acids.

Evening primrose oil contains gamma-linolenic acid (GLA). GLA is an omega-6 essential fatty acid that has anti-inflammatory effects in the body. 

People use evening primrose oil for premenstrual syndrome (PMS), menopause symptoms, arthritis, high cholesterol, acne, and many other conditions, but there is no good scientific evidence to support these uses.

Don't confuse evening primrose oil with other plants or oils that are sources of GLA and omega-6 fatty acids, such as black currant, borage, and flaxseed oil.”

So, like many things, there will be some saying yes, so saying no..

[PhilFreeToAsk in reply to DorsetLady]

Thanks. So important to hear other’s experiences. Just came across this link from US arthritis re:EPO. arthritis.org/health-wellne...

“Origin: The seeds of a native American wildflower, containing 7 to 10 percent gamma-linolenic acid (GLA). Dosage: Capsules, oil and softgel; generally five 500-mg capsules per day. For rheumatoid arthritis (RA), 540 mg daily to 2.8 g daily in divided doses. Evening primrose oil may take up to six months to work.”

Very interested in other’s opinions and experiences.

[DorsetLady PMRGCAuk volunteer in reply to PhilFreeToAsk]

Back in the day it was heralded as a miracle for ladies of a certain age -for some it may have been -but didn’t do a lot for me..

..but like most things in life, you don’t know until you try …

[PhilFreeToAsk in reply to DorsetLady]

Indeed. I am willing to consider, not try, anything that supports the treatment to get better quicker. Although steroids help in the long term it may have a detrimental effect on an existing condition.

[Dochaz]

Over the years I have tried a number of different things for better sleep, boosting energy, menopause, etc and can honestly say I derived absolutely no benefit from any of them. I no longer want to waste my cash merely to finance the companies who make them.

That said, I have friends who swear by supplements and seem to think they work for them. So no knowing till you try. Belief seems to be a major ingredient!

[piglette]

I am very cynical about supplements. The industry makes a fortune out of us with no proof that they actually work or not, as they do not have to go through the testing like the pharmaceutical industry does, and some are actually harmful. They reckon around 96% of supplements sold were not actually needed, but I suppose there is the placebo effect that helps people. Check carefully before taking anything, but if it works for you, fine.

[PhilFreeToAsk in reply to piglette]

That is why I posted to get anecdotal evidence of things that have helped. I will do my own research to come to a judgement on both herbal and medication. There is scientific evidence to support turmeric and epo. I do not know whether these are strong enough to work with steroids. I am confident that using turmeric in cooking will do me no harm, so why not use it?

[Koalajane in reply to PhilFreeToAsk]

I tried turmeric for about 4 months and unfortunately it did nor seem to help me.

[piglette in reply to PhilFreeToAsk]

I totally agree that including vitamins etc in your diet is a much better option than buying them as pills. I use turmeric a lot even in scrambled eggs, I would not consider buying it as a tablet though.

[PhilFreeToAsk in reply to piglette]

Agree. I put mine in porridge. Trying to incorporate into other things soon.

[piglette in reply to PhilFreeToAsk]

I had never thought of putting it in porridge. Does it make the porridge a pretty colour?

[PMRpro Ambassador in reply to piglette]

A neighbour makes a ginger and lemon drink - and a touch of turmeric. No sugar. Really quite pleasant.

[piglette in reply to PMRpro]

My sister is a ginger fanatic and is always making tea with ginger. I would much prefer to take my nutrition as food and drink rather than pills!

[PMRpro Ambassador in reply to piglette]

Me too

[Karenjaninaz in reply to piglette]

Actually, ginger is a good remedy for dizziness, nausea and wind but can increase bleeding; avoid when taking blood thinners.

I once had labrynthitis with awful dizziness and was only able to work as a nurse anesthetist for the many weeks I had that disorder. I neuro doc told me that ginger was an old remedy. I took /1GM 3x/day.

[piglette in reply to Karenjaninaz]

They say that ginger is an anti-inflammatory. There was something on TV about it yesterday even.

[PhilFreeToAsk]

Bit dark yellowish. Adjusting the amount as only getting used to the flavour. So I only put in about 1/4 teaspoon.

[Zareda]

I take Omega 3, Vitamin D & Magnesium to assist in reducing inflammation. I think they help, but I’m honestly too afraid to stop taking them thinking the inflammation will increase. I have been taking them daily for 3 years and I am down to 1mg of prednisone.

[PhilFreeToAsk in reply to Zareda]

Your story is very encouraging. Why would you stop if you feel it helps you. The ingredients are regarded as safe and beneficial. Sounds a better solution than increasing steroids to control it.

[Zareda in reply to PhilFreeToAsk]

I think it helps but I’m not sure how much is the prednisone, how much is the supplements or how much is waning PMR…,so I’m afraid to do anything that might upset the cart. That is why I’m afraid to change anything

[PhilFreeToAsk in reply to Zareda]

How much Omega 3, Magnesium and Vitamin D do you take?

[Zareda in reply to PhilFreeToAsk]

I take 2000 IU of Vitamin D, 1040mg of Omega 3 and 315 mg of Magnesium Glycinate.

[PhilFreeToAsk in reply to Zareda]

Thanks. I assume this is per day

[Zareda in reply to PhilFreeToAsk]

yes……daily

[Missus835]

D3 (3000), D3+K2, B12, C, Calcium and also what I can derive through diet. CBD oil does not help with the pain, but def helps with the mood. Tried Turmeric which did not help although it is said to take it with Piperine which is responsible for the black pepper distinct biting quality. Piperine has many pharmacological effects and several health benefits, especially against chronic diseases, such as reduction of insulin-resistance, anti-inflammatory effects.

[ShadyLady165]

I think anyone trying to figure out supplements (or "healthy foods" of any kind) should read Sally Norton's book Toxic Superfoods. She's spent years researching - and suffering from - high oxalate poisoning; turmeric is one of those high oxalate foods - along with other healthy things like spinach and chard. You can look at her website - just search for Sally K. Norton - and discover lots of information about the damage oxalates can do. Doesn't mean they do it to everyone but it sure explains a lot about some of the mysterious problems people have . . . .

[Blossom20]

I used to take Evening Primrose oil and B6 for PMT and it definitely helped. It is omega 6, and we need omega 3 more than 6., so a fish oil (Omega 3) would be better or taken alongside.

Why don't you get a book on supplements - I recommend Patrick Holford's 'Health and Nutrition' . or 'Food is better medicine than drugs'.

I think we definitely need to supplement - look how doctors finally accepted during Covid that we need to supplement with D3 , especially those with dark skin.

I don't think they will help with PMR because that is a complicated issue, auto immune, but I'm sure they help the body generally.

[PMRpro Ambassador in reply to Blossom20]

I wouldn't believe all you read by Patrick Holford - I suspect HE wrote the rather effusive Wikipaedia entry, The only bit of that that is indisputable is the "entrepreneur" and most of his writings are advertising for his supplement empire.

He has a 2:2 in Psychology and failed to complete a Masters degree. Upon this he has built a nutritionist empire. His nutritionist "qualification" is awarded by the institution he set up himself.

[piglette]

There was quite an interesting article in the Mirror today on mixing supplements. mirror.co.uk/news/health/me...

[Rottsuzi]

hi I take Moringa powder lots of benefits especially vit c I also take vit d and k2 , I think they do help

[PhilFreeToAsk in reply to Rottsuzi]

Thanks. Interesting. On my list to look at and discuss with doctors before I make a decision.

[BabyRuby1]

I’ve tried every inflammation supplement there is

Only prednisone worked

[Karenjaninaz]

The PrednisonePharmacist herself had a fatal autoimmune disease and was on 100mgm Prednisone to keep her alive. She researched what substances are depleted by high doses prednisone: Magnesium, potassium, calcium among others. I took some of her advice and did feel better but I take less as my dose is decreased. It has to make sense to me on a scientific basis.