PMRGCAuk

New PMR diagnosis and reducing inflammation through diet

Hi - This summer I was diagnosed with PMR and had a Magic Day of taking that first 15 mg prednisolone and having the pain disappear. Incredible.

But I want to get off steroids quickly, so am totally revamping my diet, thinking to reduce the cause of the inflammation. I'm following a whole-food, plant-based diet with only a tiny bit of meat and no sugar, no dairy, no gluten, nothing processed.

So far so good... I'm down from 15 mg/day to 9 mg/day in about 12 weeks. I had a couple of flares in the first two weeks when I wasn't rigorous about the diet, but no flares since then as the new diet rule is - no exceptions, ever - !!

Has anyone else worked with diet?

My GP says to stay at each dose for 4 weeks, but I'm wondering about trimming this to 3 weeks. Thoughts?

I'm in my early 50s and in good health, apart from autoimmune manifestations that I am hopeful will be brought under control with the new diet.

thank you so much!

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I wish you the very best of luck with the management of your condition. Just a word of caution though, a Pred reduction cannot be rushed, as you've learned. At your levels, following a version of dead slow nearly stop,,reducing is far more likely to have an enduring or even permanent result. So patience is is the watchword alongside all your dietary self care. Good luck!

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How long do people usually stay on a dose before trying to reduce? I'm new t this so don't know what 'normal' is. While it's probably a case of 'everybody is different', there must be some general sense of what is quick and what is slow?

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About 4 weeks is "normal" - you need to stay there long enough to be sure it is still enough to manage the inflammation. But every time you reduce the dose, from here on especially, your body has to get itself back into balance. Down to about 10mg or a bit less your adrenal glands don't have to produce cortisol, the body's own corticosteroid. From there on they have to wake up and top up the pred dose to the level of corticosteroid your body requires to function. Change the balance too much or too often and your body never gets to settle down - just like poking at a pendulum you want to get to a regular swing. The result is often you just feel rubbish all the time - and can't work out why. Allow things to settle so you feel well and stable and you have ruled out some of the variables. Just common sense really.

And if symptoms start to reappear - don't reduce. Wait another month and see if they settle.

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That is so much more helpful than what the gp said. Thank you! I understand much better now the reasoning and so will be more patient with the changes.

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This forum, with people who actually have or had PMR is very helpful..my Dr. has "two other seniors " who may have this..so most Dr's do t know much about it other than what they learned a long time ago in school...luckily mine will listen and even read articles I've brought or emailed to him...if he didn't listen he would be fired...they work for us!! Keep us informed how your diet is working out.

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See response to hedgehog8 post,

You may be one of the lucky ones that can get through PMR with minimal medication, but no matter what you do I doubt you’ll hasten the demise of PMR. It has its own timeframe!

I wish you well, and everybody on here will be very interested to see how you get on, so please keep us informed.

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Hi Linlin

Also diagnosed June and have reduced from 20mg to 9mg. Had started to reduce to 8mg using the DSM but first day on 8mg started to have niggles so upped my pred. Good luck with your diet and would be interested in how you are getting on as we seem quiet similar . Had been thinking of going to a nutritionist . Good luck

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ali5son, i'd love to do this journey with you and compare notes as we go.

There are loads of nutritionists out there, and for me the key has been finding someone to work with that is evidence-based. that is, making diet recommendations based on scientific studies rather than speculation or isolated cases.

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There was a post from someone on the patient.info forum a day or two ago who is doing the whole vegan low fat approach who says it is working for him.

My view is that you have to find an approach you can live with long term. A study some years ago found that a similar diet reduced joint pain in half of RA patients, any deviation resulted in a return of symptoms. The patients were provided with the diet during the study - but once it ended and they had to do it themselves many lapsed despite knowing the relief it gave them. As I say, it also only worked for half - different causes perhaps?

I certainly couldn't live with it even if it did reduce my pred dose - most veggie/vegan alternatives are produced from wheat, I am allergic to wheat starch. A very restricted diet comes with other problems too - it is all too easy to miss out on nutrients, especially protein which is important to maintain muscles.

Pred doesn't have an effect on the disease mechanism. I'm not sure I can see diet having that sort of effect either, managing inflammation possibly. If PMR lasts just a year or two then you could cope with the restrictions - but mine has been in evidence for over 13 years.

However - all the best and do tell us how you get on.

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Yes, it's early days but I also found deviation was a problem. Still, if it means getting autoimmune manifestations under control, I'm all in. There are plenty of good foods that are ok, it just means more cooking. Potatos, rice, baked veg, fruit, avocados, salads, artichokes, tofu.

As you point out, we have to find ways forward that work for us in the real world. And this isn't something everyone will want to do, as the changes are significant.

The protein question is an interesting one, as the science suggests we don't need as much protein as popular culture tells us. And quite the contrary, that we need less, as too much protein causes problems, like promoting cancer growth. (T Colin Campbell's work is fascinating and illuminating.) I'm doing lots of reading and studying and coming up with a high- carb diet, but whole food carbs and not processed ones. Low protein and low fat.

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I found keeping carbs low is a good idea.

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Too much protein no, but that means the sort of protein amount I eat, less than 100g meat a day, rather than US sized platefuls! And perhaps you'd like to read this article

sciencebasedmedicine.org/th...

which has a closer look at TCC's claims. Like many people who make claims about diet on the basis of epidemiological studies, he presents just one side, as does Ornish, and cherry picks the bits that support his thesis and also how to do the stats on his figures. It was no different with Ancel Keys and his claims about low fat and heart disease.

"There are three kinds of lies: lies, damn lies and statistics."

You really can prove or disprove a lot of things - even using the same numbers.

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Yes, there surely are those who disagree with Campbell. And yes, data can be presented in misleading ways. It can be interesting to investigate to what extent research or positions are funded or otherwise supported by the meat and dairy industries, which are well-resourced and powerful. Did you know that Campbell started out very pro-dairy, and that it was his research findings that changed his outlook? And he has very interesting stories to tell about the power of the meat and dairy industries.

But instead of getting into an ongoing debate here, I would rather strongly encourage anyone interested to thoroughly look into both sides,. Look into the research, reasoning, and opposing views & how well those opposing views are supported by solid evidence, and then come to their own conclusions. Ultimately we are the ones deciding how we fuel our bodies - whatever we decide, may we make that decision with confidence it is well-informed and supportive of our health.

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Quite - which is why I quoted what I did.

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The Food thing. Yes, lots of medical research about reducing inflammation of any kind (for us PMR) by shifting eating away from sugars, dairy and meat and focusing on vegetables, fruits, whole grains, nuts and seeds. I did the food change thing. I was ready to try anything that might help my pain, fatigue and physically disabling lack of mobility. I did the 'full monty' of elimination. Changing to foods from Mother Earth got me unstuck from high levels of prednisone 60mg!!!. Finally down to 4 mg and moving toward 3 mg. Pain-free!!! 95% of the time. Questions re: protein needs and nutrition? Michael Greger, MD has science based nutrition info on FREE website NutritionFacts.org. His info cuts thru all the nonsense and gets right to the scientific data food values and foods to avoid. All the best for healing from PMR for all of us. PMRJ

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I suppose it depends on what you define as science-based. There is good science - and then there is flawed science. Michael Greger's science is mostly cherry picked flawed science that he misinterprets.

sciencebasedmedicine.org/de...

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Wouldnt the Auoimmune protocol (AIP) version of paleo way of eating likely help?

They say avoid nightshades - potatoes, tomatoes etc.

Also a keto diet is meant to be antiinflamatory!

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I tried avoiding nightshades - no difference except my diet was more boring.

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That's good to hear PMRpro. Have a massive crop of toms & chilly peppers to get through. Runner beaned out now for another year.

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I think not eating too much nightshade family helps my osteoarthritis but don't think it affects PMR either way. Tomatoes seem okay, but I try not to eat too many potatoes, or eggplant and peppers.

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I do the same. After eating eggplant I felt horrible the first month of diagnosis so I eliminated night shades. In month four I reintroduced tomatoes and feel OK.

I think controlling diet is a big psychological factor since the diagnosis sends us into a frenzy causing us to feel totally out of control of our bodies and life as we know it. My doctor said to go low carb low sugar to avoid side effects of Pred which I did. As soon as I deviated I gained 2 pounds which is fine for me. The trouble is the loss of control off the diet is making me a bit anxious!

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The AIP is well worth trying.

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I did maths with statistics. At the start of the first lesson our teacher used statistics to prove that storks brought babies. We were all laughing so much no one wrote it down unfortunately. He used it to point out that we should always question someone else's research. 😂

No one ever forgot.

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Just don't forget that Pred loves to eat bones, so you're going to want to supplement whatever diet you decide on with calcium and Vitamin D. You're never going to be able to eat enough food to get the levels you need to counteract Pred - especially in the early months of treatment.

Yeah, no one likes taking pills but here we are taking pills...might as well also be prudent and take a few more to keep the worst o the side effects at bay...

Also, many folks on the board say that they restrict carbs because of the Cushing's we get from Pred. I avoid eating nutritionally empty calories, but I do eat fruit. Lots of carbs there, I'm afraid.

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That is not entirely true. There are at least 3 of us on the forum who have been on pred for 5 years or more and had no change at all in bone density. Two of them never even took calcium and vit D!

If you look at the figures you are left to wonder why they make such a fuss about pred. They say about 40% of patients on pred develop osteoporosis. In the USA, 50% of the general population will develop lowered bone density anyway.

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You're not wrong about that. Most of us outside equatorial zones don't get enough sunshine for most of the year, and then we slather on the sunscreen so we don't get wrinkles. Meanwhile, we're not producing Vitamin D.

According to what I've been reading, people on prednisone are at particular risk, and should supplement with the daily recommended intake of Vitamin D and Calcium, particularly if they are restricting dairy in their diets.

As I said, I'm no expert, but this makes sense to me, since most of us are already deficient, and there's a known link between pred and osteoporosis.

Some may not have a problem. But I don't think your sample size is big enough.

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No, but my point is that it is repeatedly said we are at inevitable risk of osteoporosis. Which we are not - it is not much different from the risk the general population is exposed to.

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Only death and taxes are inevitable.

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And some people manage to avoid the latter...

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Yea, but only if their name is Trump!

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Joining the party here as I'm one of those who has seen a change in diet have tremendous impact. I am 72, run an international organization that requires a great deal of travel, ever-changing time zones, lots of stress. After being diagnosed in May, I went to a functional medicine doctor, and besides supplements, was put on a ketogenic diet. High fat, low carb, moderate protein. I find the diet easy to maintain - high fat=never hungry. Since May I've reduced from 15mg to 6mg, listening carefully to my body. No sign of a flare. I feel better than I've felt in 20 years. And I lost 15 pounds! I know I'm lucky but I'm also convinced that getting serious about lifestyle changes can make a real difference.

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Well said, LittleSky. I'm finding it helpful and empowering to re-frame having PMR as the catalyst for getting serious about diet & lifestyle change. It's very effective in motivating changes I've wanted to make for over 15 years but kept putting off. Now is the time.

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Seeing this on a proper computer rather than an annoying little tablet, so it's good to read the whole thread in comfort. I think this is another area where we are all different, but it's simply common sense to avoid the manufactured foods human beings didn't evolve to function on, and eat real food in balance and moderation! Doing that is bound to help anyone, unless they have a food sensitivity or allergy, feel better.

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Hi Linlin64,

Compared to my wife's condition, you seem to be in great shape with your meds. You felt the relief instantly with Pred. When my wife was diagnosed last year and started at 15mg, it took 3 weeks before she felt the relief. Then, her rheumy had her taper down to 2.5mg by the 7th month. This was a disaster for her and all her symptoms came back until her GP put her back up to 10mg. She has been managing ok, but for her to be able to do some of the exercise she needs to do because she is diabetic, she has started on 12.5mg. In either case, her GP wants her to see another rheumy.

Joe

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Hi

I wish you well with your diet if it works for you. I have read a lot about different food to control inflammation but I wouldn't have the will power. If I stop eating certain foods, I seem to crave it more. There are some things that I have cut right down since I was diagnosed in June but aiming for the everything in moderation rule. The exception is if something does not agree with me.

I started on 15 mg prednisolone in June this year and now on 8 mg reducing monthly. Staying on 8 for 2 months due to a bad cold.

Please let us know how you get on.

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Hi, Mitziecat - so far so good. The thoughts ‘I want to get off steroids’ and ‘it is the bad gut bacteria craving this stuff’ gave me the will power to not eat sweet or refined things my body was craving. Now I easily choose a few fruit & nuts for a sweet fix instead, and a tiny bit of pure chocolate (no sweeteners at all).

The healthy stuff is tasting better, heavy on filling foods like potato and legumes. And I’m using lots more spice, incl anti- inflammatory food like ginger & garlic.

Was feeling so good I tried one day at 8 mg, got a little achy so returned to 9.

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An update - all is going well, sticking to the diet, at 6 mg pred and dropping to 5.5 this week.

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