The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis

[Yorksman]

Has anyone read this book by Hunwick Debby? Did they find it useful?

Generally does your diet help improve your condition?

[DorsetLady PMRGCAuk volunteer]

Diet is important…..just looked book up, seems to be newly published so couldn’t find any reviews online - in various formats on Amazon..might be worth a punt.

[Yorksman in reply to DorsetLady]

Is there any information about diet anywhere, what to eat and what not to? I searched under Nutrition but a lot of it was about peoples individual plans and experiences rather than advice about what foods help and what do not.

[DorsetLady PMRGCAuk volunteer in reply to Yorksman]

Cut the carbs is main message -PMRpro always recommends this approach- dietdoctor.com/low-carb/foods

[123-go]

Thank you for this.I haven't read the book but I have read the 'blurb' which tells us nothing that most of us don't already know or that can be read in FAQs.Personally, I follow an 'anti-inflammatory diet' and do know that if I eat certain foods such as sugary foods, which is very rare for me, I feel queasy for the simple reason that inflammation feeds on sugar. This is one example only and the experts will be along with scientific theories.

If PMR/GCA could be reversed through diet as the authors suggest, there would be no need for this forum. I'm sure the book would be useful in terms of diet, but the suggestion that the said conditions could be reversed is, in my opinion, misleading.😏

Try this to start with:

pmrgca.org.uk/information-a...

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

..and not an expert in PMR, just an author that has covered lots of different subjects….

[PMRpro Ambassador in reply to DorsetLady]

And how! Expert on growing Christmas trees too it seems! And she published an anti-cancer diet the day before this one. That raises major red flags for me.

Several diets for specific disorders on the first page of the list alone - and I bet if you bought them all and read them, the only significant difference would be in the disease mentioned in the title. Bit like the painkillers that claim to be for migraine, rheumatic pain, headache, blah blah - but when you read the ingredients list they are identical, you are paying through the nose for the different packaging ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Absolutely...

[discoballs in reply to DorsetLady]

I have read a lot of how to books over the years facts and to be honest I could have written the books by Googling facts and fluffing up each paragraph with personal things.

[DorsetLady PMRGCAuk volunteer in reply to discoballs]

Quite...

[PMRpro Ambassador in reply to discoballs]

Exactly!

[Yorksman in reply to discoballs]

Agree, lots of authors do that.

[Yorksman in reply to 123-go]

Thanks everyone. Can you tell me more about your anti-inflammatory diet please?

[123-go in reply to Yorksman]

No added sugar, no bakery goods (cakes , pastries-an occasional plain biscuit), no processed items, e.g., from the deli counter: bacon, sausages, salami, pastrami, etc, no fried and especially deep fried foods, very occasionally red meat.Eat plenty of leafy green veg and broccoli, cauliflower, cheese, eggs, white meat-chicken/turkey, good fats-extra virgin olive oil, butter but don't overdo it.

Others will be along and do look in FAQs for info.

Sorry to be brief, holidaying daughter-in-law's garden to attend to 🥀.

Try thisnto start with:

pmrgca.org.uk/information-a...

[Yorksman in reply to 123-go]

Thanks, very useful. Got my garden to do as well!

[Yorksman in reply to 123-go]

Thanks for the link, useful info on this site can be trusted.

[Bennijax in reply to 123-go]

Thank you, 123-go. Yes. I heartily agree with you. From the start of the PMR symptoms I cut out gluten and wheat/ gluten containing grains. That has helped hugely. The more difficult cuts for me were carbs in obvious and then hidden forms, and seeing sugar as poison because it whips up more inflammation. I can't do without carbs and some sugar, but when I'm very careful I do feel better, less pain, stiffness, queasiness, and mentally more sharp. I hate living like this, yet it does help.

I agree, if diet alone would cure PMR and other inflammatory diseases.......if only...... but the book will help many people who have yet to understand the interactions.

[123-go in reply to Bennijax]

We never really stop learning, do we?I do allow myself a little treat from time to time but make sure that treat doesn't become a habit.

The times people have said to me, "Once won't hurt you". We have to think about all those "Onces ". That isn't a word is it? You know what I mean 🙂.

[PMRpro Ambassador in reply to 123-go]

Wonder if they say that to people with allergies????

[123-go in reply to PMRpro]

Let me think 🤔. Can't choose between likely and very likely.

[Koalajane]

I hadn’t realised that PMR could be reversed!

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

🤔 hmmm…

[PMRpro Ambassador]

I think it should be reported to advertising standards or whoever - or maybe books can't be. There is no diet on earth that will "reverse" PMR or GCA - that is like saying diet can "cure" cancer. I have just read the blurb on Amazon - it alone has several incorrect or misleading statements and seems very simplistic to me.

I do not deny that diet can help mitigate both PMR symptoms and pred side effects - we talk about it all the time on here after all. Cutting sugar and simple carbs is likely to help not only with weight gain but also with inflammation but it won't "cure" the underlying autoimmune disease and it will vary from person to person. Some self-styled experts say nightshade veggies are pro-inflammatory - others say they are good for inflammation! I cut out nightshades early in PMR - all it did was limit my diet and make it far less interesting! Now I eat them all the time. On the other hand, like many people, I do know if I eat too much in the way of carbs I will notice. Some can't drink alcohol, others can. The ZOE studies are showing there are significant differences between persons - for example, some develop spikes of blood sugar in response to tomatoes, others don't! Same applies to lots of foods and ZOE offers a program to identify and plan a diet tailored to you. If I could afford it, I would try that!

It may be useful but it WON'T reverse PMR or GCA and it shouldn't replace pred in the management of GCA because the potential risks are too great. PMR is another matter - I lived with it without pred for 5 years and maybe this would have made that time less uncomfortable, only way to find out is to try it out and I suppose $4 isn't a fortune even for under 70 pages!

An anti-inflammatory diet is an anti-inflammatory diet - and there is plenty about that to be found by googling it. Free!

[Yorksman in reply to PMRpro]

Thanks, very useful. Increase protein, reduce carbs seems to be the way.

[PMRpro Ambassador in reply to Yorksman]

It is - and then you work on your personal variations. A diet/activity/symptom diary is a good move for many. Not only because it is easy to misjudge exactly what you are eating without paying attention but also because it gives you a reference to look back at.

[Yorksman in reply to PMRpro]

Thanks, I already keep a record of what I eat, just need to be sure I'm eating the correct things. Do you know why carbs are a no no?

[123-go in reply to Yorksman]

If I may butt in here- have a look at this link re inflammation and carbs:eatingwell.com/article/7827...

It's good to question things we read bearing in mind that we are all different and foodstuffs may affect us-or not- in different ways.

[Kendrew in reply to 123-go]

Hi there,Found that really interesting.

I'd always believed sweet potatoes were high carb and although they do indeed have carbs in them, they're not as bad as I thought. I love them too so will definitely be re-introducing them into my diet in small amounts.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Much better than white ones!

[Kendrew in reply to DorsetLady]

I knew white potatoes were a definite no-go but also thought sweet potatoes (because of their name) might be higher in carbs! Every day's a school day! 😬

[PMRpro Ambassador in reply to Kendrew]

They are about the same - but a different constitution with fibre

[Kendrew in reply to PMRpro]

Do sweet potatoes have more fibre then?

[PMRpro Ambassador in reply to Kendrew]

webmd.com/diet/sweet-potato...

eatingwell.com/article/2909....

You might notice they seem to contradict themselves - I suspect there is a difference in density so there are differences for similar volumes of the veg.

[Kendrew in reply to PMRpro]

Thanks for that info. Much appreciated.

[Bennijax in reply to Kendrew]

Sweet potatoes are my mainstay now. I'm always looking out for different varieties. My nutritionist recommends boiling them so that they have a lower glycemic index, but baking them in the oven does make them sweeter which satisfies my occasional need for a treat.

[Kendrew in reply to Bennijax]

Thanks for that. Once boiled, would you mash them or roast them in oven?

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Either! Mashed can be used instead of white on shepherd/cottage pie.Not sure I’d try on fish pie though -but that’s personal view.

[Kendrew in reply to DorsetLady]

👍👍👍

[Lonsdalelass in reply to DorsetLady]

I have never really liked them, think it's the 'sweet' bit I can't shake off, yet I know it's not sugar 😅 I was served a large portion once and it put me off having them again. Maybe if I introduced a very small handful now and again.....

[DorsetLady PMRGCAuk volunteer in reply to Lonsdalelass]

I do not have that often-nor any potatoes actually.

At last annual bloods (April) my potassium levels were higher than should be (hypertension tablets apparently-and don’t want to change them) so am bit selective of certain foods. Retested last week and lowered..

Thought once off Pred and GCA in remission life would be a bit simpler, but apparently not!

Anyway back to SP wedges -if you cook them yourself you can add spices or herbs to make a more interesting flavour -after cooking-

“Season last, if desired.

Add salt before baking the fries, but wait to add any spices until after baking. Otherwise, the spices will burn and lose their flavor. I love to balance the sweetness of the fries with a little cayenne pepper and garlic powder, and lots of freshly ground black pepper.

Another benefit of seasoning last? You can add spices to taste, so you won’t overdo it”

[Lonsdalelass in reply to DorsetLady]

Hmm, OK, think it's worth a try, and I've got both of those spices in my cupboard so no excuses 😀. Thanks DL.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Make nice wedges as well -BHF put me on to those years ago!

Just not too often or too many…

[Kendrew in reply to DorsetLady]

Yes...David makes lovely chunky sweet potatoe wedges that we'd have with fresh pan-fried tuna and salad. Yippee...we can have them again!

[123-go in reply to DorsetLady]

Love them!

[123-go in reply to Kendrew]

One average to large-ish sweet potato slice into chip shapes but thinner , brushed with a little extra virgin olive oil (I use my pastry brush which is now largely redundant), sprinkled with smoked paprika and baked goes a long way. 😋

[Kendrew in reply to 123-go]

Yumm-eee. Definitely try those. 🙂

[Yorksman in reply to 123-go]

Thanks, will have a go.

[Yorksman in reply to 123-go]

Thanks for the excellent article about what to eat and what not to eat. At the end it promotes a book of menus, Ha! this is where I came in this morning! Has anyone read Meals That Heal

100+ Everyday Anti-Inflammatory Recipes in 30 Minutes or Less: A Cookbook

Part of Meals That Heal

By Carolyn Williams

[123-go in reply to Yorksman]

Don't think I've read that: will have a look later. It's "that heal" which makes me cringe slightly 😏.

[Newplodder in reply to 123-go]

Ho! That's me going to treat myself to the occasional sweet potato! Always preferred them over ordinary spuds, but had currently ruled them out as underground veg. I was also a cake maker at home. Paused that now, but have just made a batch of homemade bounties! Dessicated coconut, coconut cream and coconut oil. Added a small amount of sugar, chill in fridge and cut into chunks covered with a thin layer of 90% cocoa chocolate. They are a real success! Rich, so I don't need much as a treat and they work out as about 2 carbs a chunk. Unfortunately hubby has already scoffed a couple......

[Yorksman in reply to Newplodder]

and the recipe is ??? please.

[Newplodder in reply to Yorksman]

I started with a small experimental batch ie 135 grams of unsweetened coconut flakes(I blitzed them to make them smaller)...so you could use dessicated. 40 grams of coconut cream....this helps the whole set, so you need it . And 2 tablespoons of coconut oil which helps bind the mixture. I quite liked the taste as it was, but I added 20 grams of sugar , so hubby would like them( I tasted as I went, so you could add more or less.) I only had caster sugar, but next time I will try with icing sugar, as I could possibly use a tad less. Spread the mixture in a tray lined with baking paper ( in case in sticks) . My layer was about 15mm deep. Put in fridge to chill/set. Took about 20-30 mins.I then cut the slab into 12 chunks. They can't be too small as the mixture may fracture otherwise, but I got nice firm chunks . Melt some chocolate in a bowl over a pan of hot water...or I guess you could melt it in the microwave. Then dunk each coconut piece into the chocolate and leave to set. I double dunked as the chocolate coating was a bit thin, but you can build it up. I was surprised at how far a bit of chocolate goes. I usually find 90% chocolate too bitter, but it works well with this fairly sweet mixture. I totalled up 30 grams of carbs for the whole. Could be reduced with less sugar. So on average, 2-3 grams per chunk (they ended up differentsizes)..not bad I thought.

Not sure how long they keep, but I suspect they'll only last a few days at the most anyway. Hubby was most impressed!

Let me know how you get on if you give it a go

[Yorksman in reply to Newplodder]

Many thanks, will do.

[Newplodder in reply to Yorksman]

I had a shufty at a keto site, where they do hardcore carb cutting. For this recipe you can also substitute one of the keto sugar replacements eg something called stevia and various others. I didn't fancy the sound of them so compromised with old fashioned sugar, but always an option if the sugar content is too high?

[PMRpro Ambassador in reply to Newplodder]

There is a caveat to using sugar replacements: your body is conditioned to release insulin when it experiences "sweet" so learning to tolerate much less sweet is also quite important for a few reasons.

[123-go in reply to Newplodder]

They sound delicious! I'd have to hide them from my husband. 🙂

[PMRpro Ambassador in reply to Yorksman]

Sugar and simple carbs which turn to sugar in the body are believed to increase inflammation. While on pred sugar and simple carbs add even more to the blood sugar level created by pred: steroids trigger the liver to release random spikes of glucose from the body stores in the liver and muscles. This triggers the release of insulin but more than required because the body is expecting a full meal - the blood glucose level plummets to too low a level and you crave carbs to bring it back up, which is what causes the constant hunger. The unused insulin causes that excess sugar to be stored in the body as fat, particularly on the back of the neck, around the face and midriff in the typical steroid pattern.

By cutting the carbs you CAN control, the dietary ones, you can often keep both weight gain and the development of pred-induced diabetes which is also a risk.

[Pegasu in reply to PMRpro]

That is really useful, thank you. I've just been told I have pred induced diabetes and to control carbs. Not sure which because as you say everyone is different and there is no definitive answer on Google.

[PMRpro Ambassador in reply to Pegasu]

"Not sure which"

The answer to that is to start with a very low level and then it doesn't matter which! Some of us need very low levels to lose weight but whatever certain foods do for you and not for others, the lower you get the overall carb level, the more weight you are likely to lose. If you don't lose weight, then whatever carbs you are eating are too much for YOU, even if your neighbour loses like there is no tomorrow. And if you aren't losing weight - that is because whatever it is you are eating is probably spiking the BS levels. If you cut them out and then reintroduce one thing at a time you are able to identify the problem foods.

[Pegasu in reply to PMRpro]

The problem is that my weight has been stable throughout, I haven't put on any weight on the scales with pred although my face is a bit fatter, though only noticeable to me. I am borderline diabetic so no meds given yet. The nurse told me not to eat berries and watch the carbs. That was all the advice I had. I eat a healthy diet anyway, pescatarian, no cakes, sweets or biscuits. I like a Mediterranean type diet, I occasionally have potatoes, not every day, pasta, not every day and I do like a lot of rice. I have changed that to brown rice but not sure what else to do. By the way my MRI has come back as 'normal'. I just wish I could get rid of this dreadful pain and be able to go for a walk! I have written a letter to my GP today telling them I am fed up with the pain and asking them to do something about it. I've had this for 6 months now been up and down with the steroids and had no relief at all in all that time. NHS is in crisis, no appointments available with any specialist. I know I am lucky that I don't have something far worse but I want to get on with my life while I have it, I'm 71. Who knows what the future holds. Sorry to moan, I know you are all going through it but sometimes it helps to let off steam a bit.

[PMRpro Ambassador in reply to Pegasu]

It does - and part of why we are here.

However - "The nurse told me not to eat berries" - why on earth not? Of all fruit they are the lowest in carbs!

" I just wish I could get rid of this dreadful pain " and "been up and down with the steroids and had no relief at all in all that time"

always rings major bells for me with a PMR diagnosis. If you really got no relief even with your starting dose then it must be questioned as to whether it is PMR at all. I know you are desperate to get off pred - but the reality is that it if IS PMR, in the UK pred is the only option really. It is possible that either methotrexate or leflunomide MIGHT help - but for that you need a specialist referral, And although the NHS is in a mess - it IS still possible to get referrals, even if the appointment then turns out to be by phone.

[Pegasu in reply to PMRpro]

Hi, thank you for your reply - yes the first steroids did get rid of my shoulder pain but the pain in my buttocks and legs has never gone at all. I wouldn't mind going up a notch with pred but the GP won't do it. He only agreed for me to stay on 15mg because I pleaded with him not to lower it. I am finding that I can stand up for longer on this dose but still not walk without crippling pain. The GP has tried countless times to get an appointment with the rheumy but they don't answer him. When I called they said there are no appointments. I can see all the letter exchanges in my online patient notes so I know he has done it. Now the MRI has come back 'normal' I don't see what else it could be. As I said I have now written to my GP so I have it in writing that I need a solution to this.

[PMRpro Ambassador in reply to Pegasu]

Well we have suggested what it could be - and an MRI wouldn't show myofascial pain syndrome effects. I'm sorry - bit I do find the excuse that they don't respond a bit strange. He could actually go to other hospitals - it doesn't have to be your nearest since you are in England were there is a lot more choice than a lot of people are aware of.

[Pegasu in reply to PMRpro]

I will say that to him if he replies to my letter but it does seem that he has reached out to other hospitals locally. He is aware that I cannot travel far due to the pain. Maybe I could book hospital transport if I could get an appointment somewhere. I will ask, thanks. I will mention myofascial pain also.

[discoballs in reply to PMRpro]

Oops missed this one about Googling stuff Like minds!

[Bling123 in reply to PMRpro]

Yes I the opportunity of joining the Zoe diet but found it very expensive and couldn't afford it as I'm reducing my steroids and thought it would help .

[Newplodder]

I'm following a low carb diet as mentioned on this site. Not everyone has one of course, but I wear a fitbit tracker I've had for years. Since I changed my diet, I've started to log what I eat and drink through the day on the app, and that has been handy for me. For example, it clearly illustrated that my protein intake wasn't probably enough, despite eating more fish and seeds etc. So I now have added in protein powder to my day (yummy!🤪). Too early to know yet for me how much this helps, but I don't think it can do any harm. Mind you, next time I'll choose a different protein powder! It was described as tasteless, no additives etc....but it defo has a taste!

[Yorksman in reply to Newplodder]

Good idea, what app do you use?

[Newplodder in reply to Yorksman]

Hi. My Fitbit charge 2 links to the fitbit app on my phone . So I input my info into that. It's quite old by today's standards, but does what I need/want. It automatically clocks my steps/activity, so I can see at a glance that from 10,000+ a day, I now average 3,000...🙄. It also indicated before I was diagnosed, that something was going on. It monitors your resting heart rate, and mine had been climbing over a couple of weeks. It has gone back to normal for me now. So I find that stuff quite interesting. I think most smartphones have an inbuilt health app nowadays too, although I haven't used one....might be with checking what your phone has already?

[DorsetLady PMRGCAuk volunteer in reply to Newplodder]

They do, but fairly basic -some info has to be input and total number of steps only accurate if phone in pocket (or wherever) -all the time! Unless you go for a SmartWatch or similar…

[Newplodder in reply to Newplodder]

The app stores also have food and/or fitness monitoring apps to download. Some of those are free also

[Yorksman in reply to Newplodder]

Thanks, I like the idea of an app that tells me if I'm deficient in some food item. Will look for one.

[Seacat30]

If you buy a copy, and find that it is rubbish, you will be entitled to write a powerful review that warns other people off.

[Yorksman in reply to Seacat30]

Thanks, I won't be buying it!

[PMRpro Ambassador in reply to Seacat30]

Surprised she didn't contact the forum really! Or maybe not ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Why let facts get in the way….😊

[PMRpro Ambassador in reply to DorsetLady]

A common habit it seems ...

[HeronNS]

Not this book but in early days I ordered a book on a PMR diet, same sort of idea I guess, and it seemed so useless, full of recipes I likely wouldn't make, and no information I didn't already know (and this was early days with PMR), that I sent it back.

[rosie_jones]

Have you seen how many books this person has on Amazon? There appear to be 141!

[PMRpro Ambassador in reply to rosie_jones]

I noticed there were a LOT of pages on the list but the first was enough to convince me this is a book-factory product not one from someone who knows much about the specific disorder!!!! I didn't spend any more time on it!

[DorsetLady PMRGCAuk volunteer in reply to rosie_jones]

..and of course she must be an expert in all she writes about!

[Zozoi]

Hello, I agree with everyone, diet will help but to state it will reverse the condition is irresponsible and gives false hope. I also have found benefits in cutting all sugar, gluten, cow dairy. It made a huge difference and I stick with it specifically when I tapper down. Exercises , I feel have helped me, like walking, cycling and swimming. And some may believe it or not but my last thoughts before falling asleep was “ I hope I wont wake-up in pain”, my friend told me to change that thought to “ My head is fine, my neck is fine” and to repeat it to myself. It worked for me, I ended up waking up more days than before painless and nowadays unless I had a bad night or stress I wake up without the pain And in very short time too. That does not mean I am free of GCA, but somehow, my brain goes with what it is told. I ended up tapering down quicker. Again, this worked for me, but I do not hold the solution for everyone. I was supposed to be “ an excellent candidate” by the Rhuma to recover from GCA in 2 years, here I am nearly 4 years in and at 6mg. I accepted I may never be free of it, as long as the pain is managed I feel lucky.

[PMRpro Ambassador in reply to Zozoi]

"I was supposed to be “ an excellent candidate” by the Rhuma to recover from GCA in 2 years"Honestly - it defeats me why they say such things!!! They can't even predict whether it is PMR or LORA (late onset RA) which can present identically and autoimmune disorders are all different from patient to patient. They don't have crystal balls - so why waste their breath and your hopes?

[DorsetLady PMRGCAuk volunteer in reply to Zozoi]

Did you Rheumy tell your GCA that -obvious wasn’t listening!

[agingfeminist]

I am sorry but this might not be the reply you want. BUT I have eaten a very healthy diet for 20 years. It didn't prevent me from getting PMR/GCA. I continue with my healthy diet and now get benefits of reducing some of the side effects of pred. No carbs, so no weight gain from pred. No sugars, so no diabetes from pred. calcium and vitd rich, protects my bones from pred. BUT I still have muscle myopathy and hair loss. and adrenal insufficiency. I still feel ill most of the time.

Diet is important but it is not a magic bullet...I suspect such claims are complete nonsense based on minimal anecdotal evidence. The immune system is extremely complex...it would be great if we understood better. Eat well but don't expect it to be a magic cure.

[Sufferinginsilence]

I'm not sure about a specific diet to help PMR but just wanted to say that my gastroenterologist put me on a low FODMAP diet quite recently because I have severe diverticulitis and IBS on top of the PMR and I have found that cutting out gluten, lactose, onions etc is making me feel more energetic and I genuinely don't feel as sluggish as I did before. I'm on 8.5/8 mg (tapering) of Pred and I feel better than I have in a long time.