PMRGCAuk
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Pred versus diet

Whenever I mention to anyone that I have PMR and am taking Prednisolone, they ask, can't you control it with diet, but I wouldn't know where to start. Is this possible, and does anyone have any suggestions please

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Morning

AS far as diet goes we can have a low carb diet to help with weight and eat food that helps with inflammation .

But as far as I'm aware that is all.

Perhaps thay hear that you can control illnesses like Diabetes and think PMR is the same as far as being controlled

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Yes,Rose54,you are probably right, people who don't know PMR don't really understand, but still make me feel a bit defeatist

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Ignore ignorance and people who have no idea of the tangled mine field we walk on. You are doing your very best xxx

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Thank You Linda xx

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I think here is one person going all out to go diet only. I’ll try to find thr posts or maybe someone can remember. Have you tried searching the forum yet with words like “diet”?

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Hi SnazzyD please can you tell me how you search the forum?

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Shame I can’t send a pic within this post to show you, it won’t let me. There is a banner at the top of the page which you might not be able to see if you are a long way down a list of replies. It says Home, Hub, Chat and a green HealthUnlocked. If that is the case, scroll up until it appears. At the top right is a grey box with SEARCH PMRGCA UK on it. Type in there what you want to search, like “diet”

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Thank you I will look x

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Thank you I will do that now. Beryl

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OK found it, great lots of good wishes Beryl

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No I was mistaken, they were doing a ‘severe’ elimination diet while still on Pred. There have been a couple saying they were embarking on a non-Pred approach but I don’t know what’s happened.

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Yes I am also on PMRGCAUK.

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The only (and I mean the ONLY) thing to control the pain and incapacity of PMR is prednisolone, which causes increased appetite = weight gain hence the low card diets that you see here, the prednisolone can also cause diabetes so the low carb diet helps prevent that. Sadly I had diabetes before I got PMR!

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Yeah I have to sadly and angrily agree. It’s a bugger isn’t it xxxx

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Since taking prednisolone I have been virtually pain free apart from my groin which I am now thinking may be iliospoas bursitis but have been tapering off and was down to 9mg and had two flare ups last week and had to up the dose

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It certainly works so well xx

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I also have bursitis, and also OA in both hips, so can’t blame everything on to PMR, but am so grateful for Prednisolone, it’s helped me get my life back, even with the side effects xx

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No Jeannie we can’t control these auto-immune diseases with diet, I wish we could. We have to have the steroids because otherwise we would have, pain, stiffness, limited mobility and dangerous inflammation in the arteries. With PMR this could allow more serious forms of Vasculitis to develop, like GCA or in the Aortic Valve. Of course with the latter two, unchecked inflammation can cause irreversible effects like loss of eyesight.

I find it annoying when people continually question the steroids we have to take, as if it somehow shows a lack of self discipline.

That is not to say that a good diet, rich in vitamins and minerals, high in calcium and vit D is not a very good goal and that white carbs and sugar are our enemy. You see lots of anti- inflammatory diets on the Internet. Who knows? People claim great benefits from them. No doubt they will speak to you, if they see your post.

Nobody ever wants to take Pred with all its downsides but so far, there is nothing else and actually it is pretty good.

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Thank You all for your replies, made me feel a bit better about myself!!! x

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Profoundly well written common sense as always dearest Jane. Please tell me how you are today as I’ve been thinking of you. Xxxxx

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I have tried with diet to control autoimmune. Have had PMR and GCA and yes carbs and sugar are our enemy. Have a good day....

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Hi

They are probably thinking about diabetes! This sort of comment does make you upset, a bit like ‘But You Look So Well!’

I’ve recently had issues with a drug affecting my Liver Levels & apart from my Husband & Sons l’ve only discussed it on here with my friends/members who understand!

In general, most folk don’t understand, any questions just ask here.

Best Wishes

Mrs N 🌺

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I agree Angela. It’s pointless sometimes trying to educate people xxxxx

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Oh that is irritating - if it was as easy as changing our diets to get rid of PMR, I think we would all have done it by now! Having said that, a bad diet will make the situation worse. A good diet (low carb, no sugar, lots of veg) will help prevent weight gain, reduce inflammation, protect our bones, etc.

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Yes, already doing my best ,even though it’s hard sometimes!!! x

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Jeannie it is hard and sometimes seems to not be doing the trick but imagine how bad you would be if you were NOT following a sensible eating plan xxxx

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Yes I know Linda, just got a bit down about it really , but have got myself over it now. Am still on holiday in Turkey, 2 weeks until I get back to UK

xxx

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You may be able to help it a bit and so manage on a slightly lower dose of pred - but it can only help so much. Pred is the only reliable answer to the inflammation of PMR I fear.

You may also find claims on the internet that "I cured my x,y,z by diet" but most of them are guff. Usually expecting you to pay for a diet plan and a load of supplements - good for the seller, less good for your bank balance.

I will admit that there is a study that found a strict vegan diet helped reduce joint pain in rheumatoid arthritis. It only worked for half of the not particularly large group and any reintroduction of even very small amounts of animal protein in the form of dairy caused the pain to return. The patients did manage to stick to the diet while they were provided with their meals - but it was so extreme they mostly gave up when they had to fend for themselves. This was some years ago so it is probably far easier now to try it. Venus Williams claims to manage her Sjogren's syndrome with a raw vegan diet. But we don't have either RA or Sjogren's.

But people have very high expectations of diet after all the stuff celebrities spout without knowing the first thing about nutrition and of the medical field. Sadly there aren't always easy answers or better drugs or even cures. It isn't you - it's them...

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Thank you so much, am quite a healthy eater anyway, but just wanted a bit of back up really, am feeling a bit better about myself now x

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Just say no. We are continually trying to figure out how to help ourselves, hence the value of this forum. Having someone come along and make comments as if it's your fault as you don't control your diet burns me up.🔥🚒

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Thanks Bunnymom, that’s just the support I need, thank you x

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Me too! Gives me pred rage!!

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I tried low carb, no sugar,turmeric in everything,cut out caffeine etc. GP said I was too thin and told me to eat more carbs, nothing made any difference to the pmr .Although when I overload on chocolate and cake I do feel rough😝!!

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Sounds like a good rough tho lol x

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Ooh well. I admire you but envy your ability to eat cake!!!! Oh cake!!! Wherefore art thou!!!

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In your dreams, Daisy, in your dreams!!!

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What a strange thing to ask. Why do they think you can control it with diet? Do they think the same about cancer, ebola .... ?? Sadly the only thing that really helps the pain is pred. Diet helps us all irrespective if we have PMR or not. A good diet is a lot better than a bad diet!

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Yes I try to stick to a healthy diet anyway, I always have. I think because mainly so many people have never heard of PMR

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I hadn’t heard of PMR until I got it. A lot of people muddle it up with fibromyalgia as well. It just seemed so strange though of your friends to suggest your diet could control PMR when they probably would not have said the same thing about other diseases or do they!

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No you are completely right, and they are NOT my friends, just acquaintances who think they know it all!! x

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I agree piglette. Sometimes people need to butt out. They see some half wit on tv and think organic earwig nostrils on toast will fix anything!!!!!

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They also get conned into paying a small fortune for their organic earwig nostrils. Perhaps I should rethink my money making strategies!

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I’ve had it said to me many times. People get the idea that certain foods may trigger pmr. If that was the case, I think someone may have discovered it by now.

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"Do they think the same about cancer, ebola .... ??"

There are people who do and flog very expensive "cures" on the internet or via "clinics" to desperate people for whom there is nothing in mainstream medicine. Sadly - hope springs eternal.

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There was a place in Bristol that was offering chopped up raw veg as a cure for cancer. I think in the end they were taken to court as people kept dying. It just seemed strange that Jeannie’s friends were suggesting diet instead of meds.

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Gwyneth Paltrow and her ilk have a lot to answer for...

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My dietitian daughter agrees with that statement! It's making their job harder, as is the ability of people with no relevant education or professional certification to hang out a shingle advertising themselves as nutrition experts to the unwary.

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I shudder every time I hear someone introduced on the TV as a "nutritionist". Meaningless - and scary.

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Dangerous

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Or Weather forecaster!

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Especially Naz on Sky News...

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There are hundreds of em! With smiley cheery faces! Sunshine & showers here!

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👹👹👹👹

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Grrr yes.

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I nursed a 32 year old mother of two through terminal breast cancer. She insisti make all her meals from the Bristol Diet book. She died anyway and I felt so sad it nearly gave me a breakdown

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That is awful. I do get really angry with these people who offer wonderful cures that really are not proven. I suppose the placebo effect may help a bit though, you never know.

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Oh Linda that is so sad, but she obviously thought that she was doing her best to fight her illness

xx

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Yes it was traumatic xx

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In the US cardiologists are the ones who "discover" miracle cure diets. A friend of mine whose lungs are badly affected by scleroderma went to Palm Springs to spend money on the author of The Plant Paradox. Lacking your research skills, I nevertheless spent hours finding scientific refutations of the doctor's claim to have found the cure for inflammation. In another instance, my supposedly rational lawyer sister is all abuzz about how another cardio, who wrote a book called something like Forks and Knives, cured her colleague's Lupus. And then there's Gwyneth....

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... who suggests steam cleaning bits of you that should never need cleaning...

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I find that I a lot of people have never heard of PMR, someone commented yesterday that she would keep on going no matter what,as if l was being rather lazy .lt is very hard to explain how debilitating it can be. I was always so active but cannot do very much without having to have a rest.l think that the previous posts say everything about the best diet for PMR,it is lmportant to lower the carbs ,otherwise just eat healthily,plenty of green veg, and salad,plus bright coloured fruit and veg with reasonable portions of protein and dairy.Sorry that you encountered such uninformed people,l know that it can be quite depressing.

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Yes I do try to do everything that I should, but also have to listen to people telling me how well I look !!! x

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That old nutmeg! I always say, l wish l felt as well as l looked!......

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Yes but knowing that looking well means. “ oh look at your fat face!!”

xx

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I know! 😂 a back handed compliment as my dear Mum used to say!

I had/have a friend who said she admired me, going out looking like l did!.........

Rendered me speechless which isn’t easy, l was on 20mg at the time! 😢

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tELL THEM IT'S NOT YOUR FACE THAT'S ILL!

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We’ve all been there. As my gp told me,it’s a hidden illness.

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It certainly is, I’ve given up trying to explain it. xx

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Short answer, no you can't control PMR with diet, although the comments on here about a healthy low carb diet being helpful in keeping our weight down and not exacerbating the inflammation is spot on. But diet didn't cause PMR and it won't make it go away. Just consider the immense variety of persons on the forums sharing their experiences and I bet no two of us have the same diet, nor exactly the same combination of circumstances which triggered PMR. We are a mystery both to ourselves and our medical people.

What irks me is the reflexive comment when they hear "polymyalgia" : "Oh is that like fibromyalgia?" Not to say fibromyalgia isn't a horrible disease for those who've got it, but why does it get all the press and PMR is unknown unless you have or know someone who has it? Plus PMR comes with the added gift of being controllable only by an interesting medication which comes with its own set of challenges.

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Oh yes, but where would we be without our miracle Pred x

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Ha! You answered your own question on why polymyalgia gets the press — pharmaceutical companies advertising their products fighting for their share of the market. The makers of Pred (hmmm, either I’ve never know or I’ve forgotten) don’t have to advertise. They know we’re in their pocket. God bess Pred.

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Yes God bless Pred, and all that rely on it xx

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But Pred is cheap & we get the generic versions anyway!

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And isn't that a blessing!

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Yes otherwise they’d be trying to reduce even quicker!

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It's all about diet. No carbs sugar or salt.

Paleo or ketosis diets work well.

Antiinflamatory foods.

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Alongside pred!

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Tell us more

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How long have you been doing your anti inflammatory diet and what do you eat?

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Yes I do have PMR and GCA. I've been on prednisone since March.

If you check out paleo and ketios diet on line you can get an idea of what this way of eating can do.

Like I mentioned it's an Antiinflamatory diet. Pmr is a result of inflammatory

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I assume they are people who do not have PMR .

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Of course, and have never heard of it before!!!! x

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The notion that food is 'medicine' has a LOT to answer for - especially when you see what some people regard as an appropriate diet and what they 'THINK' it can do !! The scientific evidence is there and anything extreme is unlikely to be healthy - obviously - but the again some people have very subjective notions of what is balanced or 'extreme'. Anyway and it is a BIG 'anyway' I personally would rather NOT go through life forcing myself to try to control everything I eat to the enth degree - especially when Pred actually has been PROVEN to be helpful. Clearly this doesn't mean I eat lots of 'junk' and highly processed food - but I don't eschew cake totally either ... and if anyone says I 'deserve' to be unwell because of that then all I can say they are not my kind of people !

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I totally agree with you, I did get a bit depressed about it, that anyone could possibly think that I wasn’t doing everything to help myself, and oh how wrong they are. !!! x

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We live in a very 'individualising' world - which suggests we somehow 'get' what we 'deserve' rather than things can just happen to us - or that there are predetermined contexts for our lives over which we have little or no control. So don't take any notice of people who like to blame you for your 'bad luck' with health or anything else for that matter !

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Thanks Rimmy x

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Lots of good points from other contributors.

I’ve read that there is no research that supports that PMR can be controlled by diet. However there are things you can do to help reduce side effects of the medication so that when you recover you are in the best health possible.

I have reduced carbs to help prevent diabetes.

I’ve increased calcium to help bone density

I’m trying to avoid sugar - I am eating more fruit that is often considered not a great idea, but I like it and it’s better than a cake!

I’m also eating a lot more veg and very little meat.

I eat a lot of fish

These are just my own ideas based on various things I’ve read. Having any illness is miserable so as much as possible you need to get enjoyment and optimum nutrition from your food. If you don’t enjoy your diet you will not stick to it.

Just as a note of interest: a friend of mine has had great success controlling severe arthritis by diet. However the results took a long time coming, many would have given up long before they saw an improvement. It also takes a lot of time and dedication but for her it’s worthwhile.

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I try and sort of do what you do. I long for cake soooo much though. I don’t think I would have been able to keep up the strict arthritis diet if it showed no results so I admire your friend. Oh it’s tough isn’t it xx

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I also eat a lot of fish, avoid red meat( although I love it), and broccoli was once my favourite, but now.........

oh well

xx

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Organic NGMO diet. No sugars. Fresh veggies. Wild salmon. No sodas. Lots of water. Turmeric 1800 mg 2 times a day. 1 teaspoon of hemp oil and other vitamins work for me in conjunction with 1 mg of prednisone.

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I’m still on 10 mg, but hoping to start tapering again in two weeks x

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I do not think so. But I do think you can control the side effects of prednisone with various diets. I am now on (and off and on) a LUPUS diet by Dr. Brooke Gardner. (youtube video or a web site called smoothieshred (dot com) is where I got the information. BUT don't PAY anything. it's just green smoothies. every morning huge ones. with mostly greens (spinach kale and swiss chard ) with a banana or blueberries to save you from the taste. and then no dairy no meat (I hardly manage that) and lots and lots and lots of salads and veggies. I know others do a lo carb diet. But I think it is all for the side effects ...or if you are overweight and need to lose..both kinds will do it. I did notice my hair was falling out less on the smoothie diet. but that could be any number of things!

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Thanks for the info , already doing most things, but will try the smoothies again, couldn’t get them down when I tried them a while ago x

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I love them but I FREEZE the greens. (kale is really bitter. don't bother) spinach is fine.. and I freeze a banana and frozen blueberries and some protein powder (no sugar or 2 mg) chocolate. and it's like a shake! (after the first couple! haha)

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Also I have a friend who has PMR and was the healthiest eater I have ever known. Markers also always LOW with the blood tests which is why the Rheumy told him to slash prednisone dose rapidly and he ended up having to start all over when his PMR flared. Prednisone is the only way with a slow slow taper (THANK goodness FOR dead slow nearly stop!) and for all of you! )

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I had the same remark made to me on Saturday by a dear friend. " Can't you use diet to control PMR instead of taking that poison?"

Made me feel inferior as she went on to say how giving up sugar, dairy, meat and fish and eating a vegan diet had got her off her (single) antidepressant. Nothing to do with the months of counselling and getting over her last relationship breakup then :)

I felt quite upset but did explain that I needed the "poison" no matter what I ate. I am glad other people feel the same. I love my food and cooking was my big hobby. I thank Mr "Roids for still being able to manage to cook on good days. Everything in moderation. Apricot Tarte Tatin anyone :D :D :D

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I wonder if we were speaking to the same person!!!!! x

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I had not heard of PMR before I was dxd. This is funny. My husband & I sat in our first visit with the Rheumy, who went on and on about it. We were relieved about a bit of it, like it wasn't life-threatening if controlled and it wasn't contagious. But the only question we kept asking him, with very puzzled looks, was "WHAT's it called again?" Those two words had never been strung together in our lifetimes!! Polymyalgia Rheumatica. That is a tongue-twister for me! It took me three months to learn to say it out loud and I still can't spell it all out! (Thankfully there is "PMR".)

So I have to go easy on my friends and acquaintences because understanding the rest right off the bat is harder than learning the name! It is my chance to spread the word.

Hugs,

Diane

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I’ve given up trying to explain PMR to my friends, how can they understand , I’ve learned mostly what I know about it from these forums , even our doctors don’t seem to be very knowledgable about it!!!

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When I was first diagnosed I asked the rheumy if there was anything I could do with diet. He printed out a sheet listing some "anti-inflammatory" foods that I could experiment with. (I noted with delight at the time that sugar was not on the list.) Since I have been paying attention it is clear that there are many opinions as to what constitutes inflammatory foods, depending on who you talk to. The low-carb crowd blames refined carbohydrates. The vegan crowd blames meat products. Others hail nightshades as the culprits. Many point to refined omega 6 vegetable oils. For what it is worth, I'm with the low carb crowd, and having eliminated refined carbs from my diet these past 9 months I would expect it to have had an impact on my PMR inflammation, but that hasn't happened as I've struggled to taper from 15mg to the more desirable 10mg level of pred.

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Thank you to everyone that replied to my post, all 92 of you, have tried to reply to all, but I am on holiday so may have missed some . You have all been very helpful, I now feel better about myself

I wish you all well xx

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Hi All Just to say that if anyone is rude and seems to be saying I brought PMR myself because of diet, weight etc etc I just say "SH*T happens to good people" and find people are at a complete loss for words (thank goodness). Take care Angie xxx

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Thanks for your support

I wish you well xx

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