Does anyone have info on trying to control PMR with diet? I am newly diagnosed but before taking the decision to use steroids (which freaks me out after reading some of the experiences people have had on here) I’d like to see if I can reduce my inflammation and symptoms by tweaking my diet and using natural supplements. Any information would be greatly appreciated.
My symptoms fluctuate day to day - some days I feel I need to start with steroids as I have lots of pain and stiffness and some days my symptoms are much better.
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You may be able to use diet to mitigate and even avoid some of the less attractive effects of pred but it is extremely unlikely you can use it to replace pred entirely. There have been a couple of claims but mostly pretty unsubstantiated in the long run. And in my experience, PMR without pred is a hard road.
There is also the point that PMR that is not managed with pred is said to be 7x more likely to progress to GCA. And then you have a stark choice: high dose pred, 60-80mg/day is not unusual, or face the very real prospect of loss of vision. If you lose the sight in one eye, the chances of total loss of vision within 2 weeks are worse than 50/50 even with 80mg pred.
I’ll second that…I was away for 2 months when my PMR symptoms started. I had no idea what it was but the pains just got worse, & by the time I saw a doctor on my return to U.K., I had the symptoms of GCA too which was confirmed after a biopsy. So it’s not something to be taken lightly.
Quite. Anyone whose PMR was entirely managed with MTX almost certainly didn't have PMR. No it ISN'T an alternative for the vast majority but it MAY act as a steroid sparer for some - at the expense of another layer of adverse effects. AND will help anyone who is actually developing an inflammatory arthritis which presents in a polymyalgic manner.
I think a well balanced diet is always good news. Personally taking supplements should in general not be necessary, you are much better getting the nutrition from your food, rather than filling up the coffers of the supplement suppliers. Having said that your doctor should have prescribed Vitamin D with calcium.
I think if it were that easy we’d all be doing it because nobody wants to take steroids. Saying that, steroids can be a game changer helping a person avoid the secondary issues of being debilitated for a long period. I had GCA and would heed PMRPro’s warning regarding that. Doctors tend to be negative about steroids and seem to see certain side effects like weight gain and diabetes as inevitable. This is where diet comes in very effectively. Also, bone health can be maintained by careful diet beyond just dairy products.
I would say if only diet alone would control PMR then we all would be going along that road. I have GCA and would say to you take the pred it's just not worth the risk of loosing your sight and triggering GCA because it's not a pleasant thing to deal with
I think it is possible to manage the inflammatory aspect of your diet by researching foods that provide plenty of Omega 3 and NOT Omega 6. There are books on the subject that advise against eating any grain fed meat for example. But personally, taking meat out of my diet made no difference at all to the progress of my taper and I’m still taking the steroids six years down the line.
You will soon recognise those foods that noticeably aggravate the inflammation, but I fear that diet alone would not be as effective as steroids and there is always the risk of losing your eyesight to GCA if the inflammation gets out of hand.
But DO PLEASE SHARE if you find a way, we are all grateful for anything that shortens our relationship with PMR and prednisolone.Chrissie
I have eaten for years what would be considered a very healthy anti-inflammatory diet...but still got PMR and GCA. Maybe they would have been worse...though I can hardly imagine that. Steroids are the only thing that zap the symptoms (but unfortunately no impact on the disease). The sooner you take the steroids the better...but keep a healthy diet (low carbs) to minimize some of the side effects of the steroids.
I have avoided steriods other than 2 injections and take methotrexate which luckily for me has worked. I tried various supplements homeopathy and acupuncture none of which helped. Like you my pain and stiffness fluctuated so felt more confident in refusing steriods.....Good luck and see if you can be prescribed methotrexate perhaps
Thanks for your reply. Did you suffer any side effects from methotrexate? Are you taking it long term or do you have to taper off in the same way as pred?
I'm taking 2 or 3 doses of paracetamol per day which helps but may be masking the symptoms. I'm finding it hard to accept I have this condition hence my reluctance to start serious treatment.
Re the diet/natural remedies, the more I read, the more confused I become about what is good food to eat and what to avoid - some websites say one thing and others contradict it. I really don't know what to do.
I have an appointment with my GP next to discuss it further.
Hi side affects but nothing awful. I am now on tocilizumab injections too but this is hard to get in uk. Methorexate does not need to be weaned off like steriods but does not always work. I cldnt tolerate steriods cos also have epilepsy.....I was initially diagnosed as PMR only. GCA diagnosis came months later ....the threat of loss of sight may have made me take steriods had I known that had it at start. Altho I am lucky enough to be close to remission this is a very nasty condition .....I wish you all the best
SharonY, may I ask if your Rheumy accepted that your epilepsy medication prevented steroids working effectively for you? Although steroids have helped me control PMR to a certain extent, because I take Phenytoin for epilepsy, I am having some difficulty in getting clinicians to accept that Phenytoin reduces the effectiveness of Pred. They don't seem to want to acknowledge the fact. At the moment I am having problems reducing below 9 mg of Pred. My Rheumy recently mentioned that I may have to take Methotrexate.
Hi I don't think they accepted it was the epilepsy meds I think they did accept that the steriod injections had no affect on the PMR. And gave me hallucinations!! I read about the interactions between the 2 medications and drew my own conclusions.... I find generally 8nteractions between various medications are not taken into account prob sadly because there isn't any other solutions. Methotrexate has helped me hope it works for you.
I see steroids as my best friend. In hospital Nov 2016 with a CRP of 243 and rising . Took 5 days to find out what was wrong with me. By that time I was feeling so ill I thought I was going to die! Diagnosis was GCA/PMR. Put on 40mg Pred and 24hrs later returned to the real world. Slow taper advise followed and now dropping from 6 to 5.5.
hate to say this but steroids freak us all out. None of us want to take but quality of life comes first and Pred gives us that. Good luck with anything you try but don’t condemn Pred because it is a quality of life we all want
Keep a symptom diary to see how it is progressing? Steroids only control the inflammation symptoms not the illness which is chugging away and hopefully getting bored in the background. Nobody has reported success on this website re supplements and diet, and we are all committed to getting off pred. If you have a lot of will power you could try something radical like the Dr Sara Myhill (former GP) paleo keto diet. (Though I notice her website says she would prescribe pred for PMR which means I think she doesn't suggest just diet - her starting dose is higher than usual for PMR at 30mg which made me a bit dubious)
Steroids are bad but not the worse thing in the world. You can mitigate the side effects.
People usually know when they need steroids, it's when they seem like a welcome friend. You could always ask for the lowest guideline PMR starting dose, which I believe is 15mg - though I would not swear to this, may be 20mg.
To be fair to her - her concept of starting at 30mg is what it used to be until they all got terrified of steroids. But I think starting at 30 results in a far better journey than starting at 15mg and rushing off the pred, Don't agree with her on much and she is currently suspended - something the GMC don't do lightly.
Not an apologist for her, especially as she is v. meat-based, but heard her talk. She says she has won all the cases they've brought against her. After her zoom talk she was taking her dog ratting. She looked like she could march ten miles without breaking a sweat. Gotta love English eccentricity.
But if the pred only controls inflammation not the illness, what is the mechanism that suggests it's better to start high? Don't understand why it isn't better to find the level that controls symptoms so a decent quality of life can be had and then taper slowly and cautiously from there. ???
The other thing I wonder about is a link between severity of illness and dose. So if you are in agony and immobile you would need higher starting dose? If in discomfort a lower one?
That IS what you are doing - titrating the dose. But you start high and go to low. From experience, creeping up rarely works - and in total you take more pred before getting to the right dose. And then over time the dose will go down. If you start low, you are getting no relief and as OonaSt says below - she was able to exercise again before losing condition. And no - no link in that way. I was almost immobile but had a miracle in under 6 hours. I still have PMR after 18 years and 13+ years of pred!
Your remarks remind me very much of my own initial reaction to having to take prednisone!
PMR is a very idiosyncratic disease, as is our response to pred. The initial dose an individual needs for PMR cannot be estimated by, for example, length of suffering before diagnosis, body weight, degree of pain. I had a miraculous response to 15 mg pred despite having been ill for over a year before. Someone else might need 20 or 25 or even 30 to get the same response. I might have done okay with 10 as a starting dose. On the other hand, if you get that inflammation well dealt with right at the beginning, and taper sensibly, pausing if symptoms start to recur, it is possible in many cases to get to a very low dose of pred within a few months to a year.
Then, of course, there's no way to judge how long PMR will last. I did very well with pred taper, down to 3 mg by the end of the first year. But from then on it was a balancing act somewhere around 2 mg for several years. So far pred zero not reached, but I haven't given up hope. Been on pred since 2015.
Yes, my experience of GCA is that it is highly individual which is why I always suggest to people they would benefit from a symptom diary and understanding their bodies. For example, I have at times struggled to differentiate between symptoms from the illness and the impact of pred. However, I think it is also useful to identify any tentative trends or themes and the basis for these, whether our lived experience, doctors' understanding from seeing lots of 'patients', or research.
Now I have started with PMR symptoms at the end of 2 months on 3mg, it is a different challenge to understand what's happening in my body. I am working with doc (RH) to find the best dose to balance quality of life with lowest level of pred and I foresee some challenging months ahead.
Good luck with your journey; as we know, 2mg is a decent place to have landed because it is such a low dose, but I do hope you are able to ease down to the magic zero in time!
My aim, once I had gained an understanding of what PMR and corticosteroid treatment meant, was to get to 5 and see how things went from there. I was furtunate that I was able to keep tapering, but stuck at around 2 and this has been the case, with the occasional exception either up or down, to this day - since 2017. I'm feeling optimistic these days as a very slow taper to 1.5 from 2 has been going well, but I've been here before! All I can say is, at these low doses the benefits of pred far outweigh potential disadvantages.
The 40mg of prednisone I was on with PMR allowed me to instantly feel better so I could start building muscle again. I worked out and ate healthy (organic, homemade food, very low sugar and carbs so had low glucose spikes, lots of veggies). I dropped 35 lbs prior to the diagnosis and had to gain weight and strength back. Nine months later, got off of pred and now workout 7 days a week. I was very focused everyday on cooking, eating and workouts. And of course, trying to relax and stress less is helpful although this, for me, is the toughest one.
Yes, you were very fortunate having a relatively short PMR/pred journey. So glad you've done well, and thanks for sharing. The median length of time before remission is close to six years so some of us take a lot longer.
I have Felt a lot better since I have eradicated gluten from my diet. I used to bake bread and had it everyday. I stopped two months ago and can feel an improvement. However it hasn’t eradicated my pmr symptoms only improved them. Steroids are necessary still
From a purely personal point of view, and I know that my experiences make me an "oddity" here (nothing unusual in that others might say) but I have found that modifying my diet, which I've always thought of as pretty well balanced and happy to eat most things, has had absolutely no effect on my PMR at all. The only thing which works on PMR for us is Pred. Am I terrified of it, no, do I hate taking it, no, am I desperate to stop taking it, no, would I take it and any other of my medications if I didn't have to, no. The time to stop taking them will happen when the various ailments have decided to disappear, if ever.
It is like many things where you weigh up the options and decide if the good outweighs the bad. Those little white pills changed me from being carried into hospital in real pain and pretty much unable to move, to giving me my life back. Pain virtually gone in hours, certainly gone in days and back to walking the dogs four to five miles a day before breakfast, within a matter of weeks.
After a few days at 15mg my doctor after checking my blood tests, working on the principle of its better to start high and work down upped me to 30mg for a week, then 25mg for a week, then 20mg for a week then the start of slow tapers down. I've also been lucky on two counts, my doctors have never chased/forced/nagged me into reducing quickly or stopping Pred and I don't get any adverse reactions/side effects from Pred (at least as yet and as far as I know,and getting on for three years in). I'm also sure that I can't be the only person like that. So I guess what I'm saying is that the side effects of Pred are "possible" side effects. You "might" get some, you "might" get none, you *might" be unlucky and get more but you won't know until you take it.
Many of those you do get could/can also be mitigated by changing behaviour and diet as described my many on the forum.
For me the downsides of taking any medication would have to be pretty dramatic to stop me taking anything that a)allowed me to lead a fairly normal life and b) was highly likely to mitigate the possibility of going blind.
Bicol, thank you so much for your response. I gives me hope. As you say no one knows what the reaction will be until the course of Pred is started but it’s heartening to know that there are people out there suffering little or no side effects.
I am nowhere near as bad as you were at the start of your illness and my symptoms are currently being subdued with paracetamol. I even played badminton yesterday! Because I’m not completely debilitated I keep trying to convince myself that the doctor may be wrong in her diagnosis or it will just go away without treatment.
I really do want to try an anti inflammatory diet but there are so many contradictions out there about what to eat and what to avoid, my head is in a spin.
I have a further appointment with my doctor next week to discuss my condition. She’s previously offered a course starting low on 15mg as my PCR is 8 and ESR is normal. The information on the NICE website suggests there should be further tests before prescribing Pred.
My corresponding results were, CRP 131.4 and ESR 54. If paracetamol is helping it may be worth perusing whether you have PMR, normal pain killers don't usually have any effect on PMR.
The information on the NICE website suggests there should be further tests before prescribing Pred.
Yes further tests should be actioned, but they are usually for cancers, maybe rheumatoid arthritis or other autoimmune diseases that may present similar symptoms.
There isn’t a specific test for PMR - it’s usually ruling out others to get to it. But one way is a trial of Pred, as your GP suggested.
As others have pointed out, if you do not get your PMR properly controlled - you run a much higher risk of it escalating in time to GCA [it’s bigger and much more sinister sibling] meaning higher doses of steroids.
No diet will save your sight, but steroids will - taken in time.
There are a lot of things to rule out before saying it is PMR. And while your markers may be raised - what you are describing really doesn't fit with most cases of PMR. Paracetamol and playing badminton???? If only!
Thanks for your reply. That is exactly what I thought! However it is my left arm that's affected and I play right handed where I have no shoulder pain at all! Reading the reports of how people on here are suffering so badly really makes me question the doctor's diagnosis.
I am slightly concerned about questioning her diagnosis as the appointment I had with her was my first ever as she is pretty new to the practice. I have a further appointment booked for next week and I don't want her think I'm Dr Google.
My symptoms are so variable too and change a few times during the day from mild to reasonably severe. My next plan is to test the effect of paracetamol by taking 4 doses for 2 days and having none for two days to see how my my symptoms are affected. Also when I have been sitting for more than 15 minutes I have to stand a little while before moving off.
I can walk (obviously) but not properly - its a bit like wading through knee deep water.
Sorry to burden you with my troubles but I really am concerned about taking steroids which may not be necessary.
PMR is typically bilateral and it is very unusual for one side to be so much more affected than the other. It is possible and the other things could fit PMR but I am a little bit sceptical.
Never worry about burdening us - it is why were are here!
It sounds like it would be worth a trial of pred to see if that helps. Your description of difficulty moving when first standing up does sound very typical PMR, and it is possible your bad shoulder has a bit more going on than PMR. I get confusing referred pain from my arthritic neck, but when PMR was at its worst, both at the beginning and a few years later when I had a serious flare, only pred helped. Other times, physio does the trick. It's annoying, because you really don't want to take pred if you don't need it, but when you do need it, it is a friend. Have a look at a little essay I wrote in early days.
Yes, but they were "hidden". The most significant was probably increased ocular pressure, which meant my ophthalmologist saw me every few months instead of my usual every two years to make sure it didn;t get serious enough to require drops. Fortunately as the pred dose decreased so did the pressure. I would not have known but I proactively had an early appointment with him because I wanted to make sure there was no sign of GCA. He sees me every year now, and will as long as I'm on pred, no matter how low the dose. He knew more about GCA and pred than my GP!
Also it's possible pred had an effect on my bones but I don't know for sure as I only had a DXA scan about four months after starting pred (and the first three months are where the effect is likely to be greatest) and have no pre-pred baseline. But I sorted that myself through exercise, diet and a few supplements and actually improved my t-score.
I also have experienced increased blood sugar levels but not to the point where I need to be treated as diabetic. I did eliminate virtually all "white" carbs from my diet for years and the levels decreased.
The first winter I was on pred I caught a few colds, which had become unusual for me, and minor cuts took longer to heal, but by the second year I was back to my normal self that way.
I didn't gain weight, maybe because of the strict diet I put myself on, and the exercise I was doing to prevent osteoporosis. Over time I've found myself weaker, but as I was 68 at diagnosis, and will be 76 this year I don't think I can blame that on pred.
As one tapers other pred effects come into play. I never suffered from fatigue with PMR or early levels of pred. However there is a stage when the adrenal glands have to up their game and a lot of us have "deathly fatigue" which you really have to put up with in order to really encourage natural cortisol production. It passes!
thank you for such a comprehensive reply. I’m sure this will be a help to me in the future. I’m glad to read you didn’t gain weight - I may contact you in the future for dietary advice!
Cut carbs - all carbs but especially processed foods, simple carbs and added sugar and be careful about fruit. It all adds up, keep a food diary and use google or an app to calculate the carbs you are eating - honestly. It isn't like counting calories, every bit of carb counts and some people can eat more than others so you have to work it out for yourself.
I find this website a good place to start - you don't need to buy anything:
I did find aspirin had a minor beneficial effect on my then-undiagnosed PMR if I took some for a headache, but not enough for me to consider taking it regularly, especially as nsaids are not good for osteoarthritis (which is what I was blaming my pain on at the time). The effect of pred was nothing short of amazing. I felt a little bit better six hours after the first dose, and on the morning of the third day was astonished to discover myself getting out of bed without difficulty and puttering around normally! Btw, I find paracetemol (acetaminophen to North American me) is generally useless for anything.
Hi, just came across your post. I'm an oddity too! Yes, exactly, exactly, practically everything in your post I could have written, especially the bit beginning lucky on two counts. Yes, the list of possible side-effects at NICE is enough to make you drop dead from terror, but they're only possibilities. Medicine has to be aware of these things but no way does that mean they're destined to happen. We're all biochemically individual. Some people get ill and die from eggs, or nuts or aspirin. So far as I've been able to tell, no-one ever died directly from Pred, as in an OD. Insulin can kill you. Fortunately not even pre-diabetic but if I were I think I'd do everything humanly possible to reverse it before accepting insulin into my life.
Thanks for your reply. I tried 36 hours without paracetamol and could barely get out of bed this morning. I’m gradually coming round to the fact that I will have to start Pred after seeing the doctor next week.
Give it a whirl. Try for a month (not everyone gets the magic straight away) and if you really don’t want it, it’s your choice in the end and you can taper off it. You might need to see the good it does (if you do have PMR) which may help you reframe the whole issue more positively.
I'm not going to repeat the views on steroids, it's all been said higher up
What I do want to share is that in the early days a few things did affect my pain levels noticeably. It worth keeping a diary to see if you can link anything. My things were alcohol (even 1 glass) and excess processed sugar. Too many tomatoes and peppers also had an impact albeit smaller.
Take the steroid but see if some small tweaks help too 🙂
Dear LCLmlbls, It is scary --- I know--- 3 years into it. I too wanted to do it the diet way-- but my symptoms got only worse---I have found this group to be very knowledgeable and right on the money--- because they speak from experience--- I learn so much every time I read what others share---- and I have found so much hope --- people do speak about "being on the other side" and how they make progress ---- at the same time I have to accept that my body's recovery has its own path. This little book has been really helpful to me: Giant-Cell Arteritis: One Man's Exciting Experience --- by Mason Clark. It applies to PMR also--- I have found it filled with wisdom and optimism and tremendous guidance for me. I have made made a few mistakes along the way--- if I could do it over again, I would have paid attention to my symptoms and verify them with blood tests (ESR and CRP)--- before making changes in the pred up or down---- also this group has suggestions for tapering which I have found to be very helpful--- Yes! I believe there is a healthy life ahead!! Hang in there!!
Thank you for your response. I have today taken the plunge starting on 15mg of pred - my doctor is trialling for a week initially. I now have to wait and see the outcome. Should I be given pred long term, I will, after reading advice on here be very cautious about tapering too soon and hope to work along with my doctor (who is obviously going to be guided by NICE recommendation). I'm keeping everything crossed!
All the best to you and good luck for a successful taper with no return of symptoms!
Exactly! you do not want the symptoms to return! When I had my PMR, my ESR was 73 , I felt better in about a week but my labs took about a month to gradually go down. My ESR was 10 and my CRP was 3, at that point I tapered 12.5. We have great tapering guidance listed in this site but every person responds differently--- paying attention to symptoms and labs is working for me one day at a time. feel free to reach out--- there has been such wisdom in hope from this group--- that I do not feel alone any more--- so many people are doing their best to negotiate their health --- many times in situations much more challenging than ours! All the best to you too!
good luck!! Once your symptoms go away. And your blood levels go down to normal range— you will be ready to consider your next move—which may be stay put for a while!
We take Prednisolone to effectively and decisively control inflammation. So continuing with inflammation inducing food like pasta, white bread, white rice, red meat, processed meats, sugar, alcohol among others cannot be helpful. So, I do think that focussing on food that has anti inflammatory properties could be helpful and benefit you in the long term, but unless your inflammation issues are very very mild a healthy anti inflammatory diet is no substitute short term for a drug like Prednisolone. Replacing inflammatory food will also restore better gut health and help you manage weight, which is also good for joints, tendons and bone health.
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