Elimination diets, do they help PMR

I am wondering if anyone has been helped with their PMR symptoms by trying an elimination diet.  My son has Crohns (another autoimmune disorder) and has successfully calmed down his symptoms by using the Paleo diet.  I think this is too extreme for me.  But, I am happy to try gluten free, nightshade vegetable free, cut down on the caffeine and maybe even the wine!  It would be really helpful to hear if anyone has had some success in reducing their discomfort and therefore, reducing their pred intake.


17 Replies

  • I cut out gluten and simple carbs, mainly because I had heard that it stopped a moon face. It did actually work, but it may of course have been luck. I think a varied well balanced diet is important, I try and include anti inflammatory foods, plus those with calcium, vit D, potassium etc which can be affected by the steroids. 

    I have two friends with Crohns, one lives on hamburgers and things I would not consider eating, he has major problems and is always on steroids, he is a bit of an idiot though, the other took her diet into account and really improved her quality of life.

  • Interesting about your 2 friends and Crohns. My son read about a man who had been very poorly & through cleaning up his diet got back his life & playing rugby a few years ago. He followed suit & came off his medication. Hopefully after a bit of a flare up he will be able to do the same again. Have to say he s far more disciplined than I!   

  • I've done all those - I was gluten-free when PMR appeared (I'm allergic to something in the structure of wheat, not gluten at all but the only way to avoid that in the UK 12 years ago was gluten-free). I eat non-wheat grains now. I've left out nightshades - all that did was make my diet very boring. I rarely drink coffee anyway but the occasional cup I have about once a month (or less) appears to make no difference and I've been in hospital for over 3 weeks and no wine - no difference.

    I eat very low carbs - lost 38lbs in pred-associated weight and am currently on 15mg because of a flare - no weight gain yet. And all the weight that went was midriff, buffalo hump and face.

    The only answer is try - but don't hold your breath. And as piglette says - adding things is probably more use in reducing the inflammation that cutting things out! Celtic also swears by oily fish, turmeric and garlic.

  • Thanks yes I agree adding things could be just as important. Eat lots of oily fish & fish oil capsules, also garlic capsules  forever it seems, plus fresh & my son got me into Tumeric. I have read "organ" meats are good & we don't often have them so it's calves liver & stuffed butternut squash tonight.....

  • No, liver and kidney is a step too far! Though have had lamb sweetbreads in France and they were amazing...

  • Well my husband loved it! Liver always reminds me of school meals though 😒

  • My flat mates at Uni used to make steak and kidney pie, putting mine on the plate with all bits of kidney removed - they really struggled to believe I could smell it...

    I love liver done as faggots as done in Wales and it is, of course, a delicacy here being not a millions miles from Venice. The texture there is OK. I can't remember it being on the menu at school.

  • My mother used to give our dog Welsh faggots, he loved them. We would be sitting round watching TV and he would come in and plonk himself down in the middle of the room and fart like mad! 

    My mother made a great steak and kidney stew, I could always smell the kidneys though. There was an old lady who lived near us who also used to make steak and kidney pie for us but I don't think she washed them out properly as they smelt of urine!

    I seem to have had a rather smelly childhood. 

  • Welsh faggots with vinegar and green peas - in that order though I can't imagine why...

  • I have made a massive difference to my fatigue and weird eye symptoms [blurry vision] by cutting out foods to which I am intolerant. 

    I have only been on Pred since January, but I wouldn't expect or hope that an exclusion diet would enable me to reduce pred any faster than otherwise. 

    I eat very few carbs and hardly any sugar, and have gained no weight...yet!

  • Well done excluding sugar must help !!

  • With an elimination diet, one has to keep in mind that prednisone reduces many allergic and sensitivity issues, so unless the dose of prednisone is low, it may mask your sensitivities when eliminated foods are re-introduced as a test.

    A year ago, at 9 mg., I followed an elimination diet called Whole30 -- you can find it on the internet.  My conclusion upon re-introducing foods was that I am sensitive to gluten (gives me headaches 2 days after reintroduction) and dairy.  I cannot tell if eliminating these foods for a year helped me taper more successfully or has contributed to what seems to be slowly-resolving PMR/GCA now.  It probably helped, but it was no miracle fix.  Now, one year later I am at 4 mg. and it takes me usually a month to adjust to each 1/4 mg. reduction to the point where I feel fine and can reduce again.  Mind you, it has been 4-1/2 years since diagnosis, and my last flare (third one) was just over 14 months ago.  Seems like it's time for the disease to resolve on its own..... if ever!

  • Thank you I will have a look at that. I am on 5mg a couple of days & have just increased to 4.5 from 4 on the other days after a flare lasting a month or so.  If it means I feel better I will be happy but not expecting miracles!! 

  • I started following a ketogenic diet last year, so that means low-carb and high fat. I managed to reduce my crp from 19 to 12 over 3 months eating this way, without making any other changes. Prior to this my crp had been stable at 19 for a year. 

    The other benefit to the diet is weight. On 5mg of Prednisone I am able to lose weight following this diet, and on 25mg I am able to keep my weight stable. Eating normally (high carb), I usually gain 1kg of weight a week on doses of Prednisone above 20mg.

  • I was diagnosed with PMR six weeks ago and since then have started on the whole 30 diet for a month (no gluten, no dairy, no refined sugar). I've always had a sweet tooth and liked my diary but so far so good. I'm not missing them too much (I have almond milk in my tea for instance) but I think that may be because I'm focused on doing whatever will help deal with the PMR. I'm currently on 30mg Pred a day and have lost 2 stone since my diagnosis (which I'm trying to put back on but in a healthy way).

    I've no idea yet how much good it's doing me but I'm willing to give it a go as some of the theory behind it (eg. staying clear of inflammatory foods) makes a lot of sense. 

  • Thanks Underlee & well done in the diet. I do agree being proactive, so to speak, helps me to be more positive about an improvement in Pmr symptoms. I am going to have a hard time when we go to Italy for 10 days😉

  • The problem with this discussion is that it is very anecdotal. Although the truth is probably that the steroids got me moving again, I like to think that it was the tai chi and recently a bit of salsa dancing that did it! But at least these are fun, which is more than I can say for cutting out half the things I like to eat. To my knowledge there are no bona fide double blind clinical tests that link diet to PMR. Placebo is a powerful effect and if we believe something works then maybe it will. We are quite vulnerable in our condition and eager to find a cure. Let's not choose those things (mostly eminating it seems from the US West coast) that restrict our lives even further.

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