PMR and diet
Posted , 20 users are following.
Anyone been counseled on dietary changes to reduce inflammation? If so has it worked have you noticed?
1 like, 52 replies
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Notes on PMR and diet
susan91476 mphooey
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ingo mphooey
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clive21800 ingo
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EileenH mphooey
Posted
Several of us have tried the "no nightshades" - all it did for me was make my diet boring! I don't eat much in the way of carbs - and have lost the pred weight as a result and that is a common thread for a lot of people - some kept carbs low from the start and didn't gain weight, others cut carbs and were able to lose weight even though stilll taking pred.
I was eating a gluten-free diet when the PMR started - I'm allergic to something in the structure of highly commercialised wheat, not gluten but the starch, in the UK then if you wanted wheat-free it meant gluten-free. Here I eat gluten-containing grains, rye, spelt and kamut, with no problem.
What causes PMR? It is the symptoms of an underlying autoimmune disorder: something tips the immune system off-balance and it doesn't recognise your body's tissues as self so it attacks various tissues. What label you get for the illness depends on which tissue/s are being damaged and causing inflammation. In PMR and GCA it is damage to the vascular system, in GCA arteries with an elastic component to the wall. In PMR it is most likely the microcirculation, the tiny capillaries which supply blood/oxygen and nutrients to the muscles. There is some thought that in GCA, a large vessel vasculitis, it may also be the tiny vessels supplying the walls of the larger arteries that are affected. The walls of the blood vessels become swollen - and the internal diameter reduced so the blood flow is reduced. Pred combast the inflammation, the swelling reduces.
What tips the immune system out of kilter? No-one knows, there is no one identifiable factor, viral/bacterial infections have been suggested and all ruled out to date. There could be environmental factors - and stress can also affect the immune system in various ways. Genes are also implicated, it is far more common amongst populations with Scandinavian forebears. It often rends to appear in various generations of a family - but not because it is hereditary but because you have the same gene pool.
Cutting sugars and simple carbs is good for weight control and also they are inflammatory. But, personally, I'd say your diet is a bit extreme in cutting all dairy and so many veggies and unnecessarily so. Be careful you don't develop dietary insufficiencies - and pills aren't as good as the natural version. A study did show that an extreme vegan diet reduced joint pain in 50% of patients with RA but any reintroduction of animal protein, even in tiny amounts, negated the result. It only worked in half though so there are obviously differing mechanisms in different people and few of them were able to sustain the diet longterm because it was too extreme. PMR isn't really joint pain though.
"...causing much of the "age-related" sort of illnesses like diabetes and inflammatory conditions like heart disease and arthritis" - not entirely true to say it is the only cause. You have to remember we live much much longer than in the past - people were dead of infections and other diseases long before they were old enough to develop "age-related" illnesses. Even Oetzi, the man found up a mountain in the Alps, has been found to have cardiovascular disease and tooth decayin his 40s - and the only sugar he might have eaten was honey!
"Since Ötzi's discovery in an alpine glacier more than two decades ago, scientists have subjected his mummy to a full-body health check. The findings don't make pretty reading. The 40-something's list of complaints include worn joints, hardened arteries, gallstones, and a nasty growth on his little toe (perhaps caused by frostbite).
Furthermore, the Iceman's gut contained the eggs of parasitic worms, he likely had Lyme disease, and he had alarming levels of arsenic in his system (probably due to working with metal ores and copper extraction). Ötzi was also in need of a dentist—an in-depth dental examination found evidence of advanced gum disease and tooth decay."
Anhaga EileenH
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EileenH Anhaga
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LayneTX EileenH
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All at same time?
EileenH LayneTX
Posted
It is probably all on a sliding scale and you can have everything from "just" temporal arteritis where a very small selection of cranial arteries is involved right through to all the arteries in the trunk and neck being affected and casuing far more widespread symptoms.
With all autoimmune disorders the name given to it in the past has been the one that a doctor gave it when s/he saw it and described it in one or more patients. Nowadays you can measure/image far more things and you can group some of them together on the basis of immunology or histology - but they have to have looked closely at the patients to know that. I'll lay odds that if they looked in more detail they would find a lot more GCA in patients who have been diagnosed as "only" PMR
clive21800 EileenH
Posted
diane67131 mphooey
Posted
Not one of my rheumatologists (I've had three of them in the last four years) has ever discussed diet with me. You would think that would be fundamental but they apparently don't teach that in med school. I've learned pretty much every important piece of information from this forum and my own journey of trial and error when it comes to weaning off the pred, diet, and leaving the doctor's office feeling like you're missing something or nuts. This forum has been a godsend.
As for diet, this past summer I was getting lazy and eating whatever I felt like. (Nothing like a fried clam roll and a beer at the local beach pub) That caught up with me. I got up one morning and could barely get down the stairs. I had had pizza the previous night and pasta the night before that. The connection was obvious. It was a definite wakeup call. Out of frustration and with sheer determination, I went on an 8-day food elimination/ cleanse regime. It was a bit of a radical move and not for everyone, but I was desperate. I felt 100% better in a week's time. I went from probably a pain level of 7 to a 2-3 in the morning and pain free in the afternoon and night. If that's not a testament to the effect foods have on our bodies, I don't know what is.
I've been careful about reintroducing certain foods into my diet since then. Carbs, wheat, pasta, sugar, dairy, obviously not good. I used to have eggs and toast every morning. After two mornings of reintroducing one egg for breakfast, I felt it so I guess eggs too. As much as I would love to have a plate of homefries, toast with jam and a cheese omelet for breakfast, I now have a fresh pineapple, mango, fresh ginger and organic coconut water smoothy for breakfast. It's a really good antiinflammatory drink.
I keep a journal of what I eat every day and how I feel the next day. That's a good way to keep track of things. It's been a daily struggle, many setbacks and a few start-overs, but I'm on 2.5mgs now and getting there. After four years, no apparent side effects from the meds so I'm keeping the faith. Good luck!
LayneTX diane67131
Posted
May I ask what your blood type is? I see no protein in your breakfast. Do you do ok without protein? What do you eat for other meals?
did Prednisone never cause you acid reflux?
Do you take probiotics?
hee, hee...I want to feel like you!
i ask ask about blood type because I crave protein, always have, big meat eater, and I'm O positive blood type, heard we are meat eaters.
diane67131 LayneTX
Posted
I'm Type A. My nephew is Type O and he got quite sick when his wife put them on a vegetarian diet. The doctor told him to keep meat in his diet and he felt much better so I think meat is a good thing for you. I don't eat any red meat. I have chicken and fish on occasion. I mostly get protein from nuts and things like that. I also take a supplement that's a powdered drink with a banana and rice milk, Vitamin D3 and Calcium with Magnesium. I do miss the eggs. I've just recently stopped them for breakfast so we'll see if I start craving more protein. Fortuntately, I never got acid reflux. The only side effects I got from Prednisone was gaining 15lbs from eating all day and then getting up and foraging like a racoon all night. I've lost all the weight and see my old (literally and figuratively) face again, so you can lose it. Oh, and yes I take probiotics.
dan38655 diane67131
Posted
I get by with just a meal bar and a cup of coffee for breakfast, the 10 or 12g of protein seems like enough for me to get out, ride my bike for a couple of hours and not feel starved.
Compared to a day where I might skip the ride and eat a serving of cereal/milk or starchy leftovers, what a difference it makes in terms of the intensity of pmr symptoms and thus of my prednisone dosage requirement.
While our medical system provides us with a bottle of prednisone and some presumptive dosaging instruction, at the end of the day it very much seems that we have to do our best to reduce our dependence on the steroids through diet and daily exercise, whatever exercise that we can best tolerate, and to determine our own dosage requirement as a real-time function of our current level of symptoms.
diane67131 dan38655
Posted
I'll try the protein bars. The smoothie tides me over for just so long especially when I'm working and I can't have lunch which happens a lot with my job unfortunately.
dan38655 diane67131
Posted
These are "meal replacement" bars having approximately 250 calories each, not so much just a "protein" bar.
Protein in these is just 30% of the calories, 30% is from fat and 40% is from carbohydrate, so these are the "40-30-30" type of meal-replacement bar, and which also contain fiber, vitamins and minerals.
The 40-30-30 type bars are available in many flavors and combinations of ingredients, so I have no problem finding some that are quite palatable!
I enjoy eating one of these bars very slowly, together with water or coffee. These bars make moderating carbohydrate very simple, while the fat and soluble fiber act to further reduce the "glycemic response" (the absorbance rate of sugars into the bloodstream and the liver).
clive21800 diane67131
Posted
Juicing for PMR. My AR doc said pineapple Bromelin/Tumeric Ginger not helpful. With the low doses you are now taking and going maybe Zero the Anti-inflam Juicing will help.
Many MD's will not poison their Bods with Prosidin. They reckon it shuts down adrinals affects/ gallbladder etc.
Maybe this will be a Good Discussion topic!
EileenH clive21800
Posted
But as I said above - this is a VERY old thread and seems to have gone to sleep as far as the others are concerned.
Rimmy EileenH
Posted
What have YOU found most useful in terms of diet Eileen ? -I am also interested in anything which discourages acid reflux as already (longtime) on a PPI and my stomach is reacting to the prednisolone after less than 2 weeks. My chemist says they dont have any 'enteric coated' Prednisolone and so far I haven't seen any around on OZ sites.
Thanks
EileenH Rimmy
Posted
Low carb - helps avoid weight gain with pred/allowed me to lose weight. It is also said to have a good effect on reflux.
I don't think enteric coated can be got anywhere other than the UK. It is possible to manage PMR with methylprednisolone injections - no stomach problems there!
But you'd be better starting a new thread - few people will see this as no new ones would get a notification.
Rimmy EileenH
Posted
Thanks Eileen may start a new thread down the track - I appreciate the info -you 'should' write a book for sure !!
EileenH Rimmy
Posted
I co-authored the booklet the NE of England charity sells called Living with PMR and GCA
jean12178 EileenH
Posted
I was diognosed with PMR August 2016.....began with 50 mg prednisone , tapered down to 3 mg by May, 2017....had CRP test...18....back on 10 mg. prednisone...be careful not to decrease prednisone too fast or you will end up with full blown PMR again....my diet has been Low carb for the past four years....PMR came on regardless....I eat no sugar, no "white" foods....Atkins/ South beach Diet....and STILL the inflammation returned....am eating tablespoon of tumeric/ginger mash daily....nothing helps....walk mile and half a day....my rheumatologist ordered an echocard, because of suspicion of aorta damage....already had the temporal arteritis surgery...negative.....am not overweight, have never been on any medication before this PMR last August...now on blood pressure med and prednisone....taking coQ10, multivitamin, calcium, vit D, and Omega three .....still no help.....am trying to cut protein intake in half, and adding more brown rice...experimenting continually with diet adjustment.....this PMR/GCA is so difficult to deal with....trying anything.....any other suggestions?????
EileenH jean12178
Posted
The only thing that deals with PMR symptoms is an adequate dose of pred - and even starting on a high dose of pred doesn't alter that in the long term. To have got to 3mg from 50mg in 9months is fast - and a step too far it seems. Once you get to 10mg you have to slow down and be watchful, allowing time at each new dose to be sure it is still adequate to manage the inflammation.
The TAB is not conclusive if negative - if positive it is proof you have GCA, if negative it just means they didn't find what they were looking for. You could still have GCA.
The only thing that helps besides the adequate dose of pred is being patient. Harsh but true I'm afraid.
And as I suggested to Rimmy - I think you would be better starting a new thread. Otherwise only Rimmy and I will see this. There are loads of others who would join in the discussion.
dan38655 EileenH
Posted
I can attest to the stubborn nature of pmr symptom expression.
Early on, just days after my primary doctor's 2-week, 20mg/day test dosage ended, my symptoms returned as I tried strict diet and exercise changes but which seemed largely ineffective. This actually surprised me.
Some months later, after finally seeing the rheumi and starting pred again at 15mg/day, then having tapered to 12mg and then 11mg, I was feeling just good enough to resume lengthy daily bike riding. There was an abrupt improvement as my daily mileage became higher and more consistent, but air-quality problems from local forest fires then curtailed my riding activity for a few weeks as I developed new symptoms while now struggling to reduce below 10mg/day.
Since I continued to reduce 1mg per month as prescribed, my condition went downhill for the next few months, so finally I held at 5mg for almost a year with symptoms being pretty bad overall.
It was only when my autumn riding later picked up that my symptoms improved again, and within 2-3 months I was able to reduce my pred sharply to 3mg, and hold it there for perhaps 3 months. Again though, winter weather again cut into my riding schedule, my symptoms returned, and I was back at 5mg/day in early spring with yet new symptoms to deal with.
It has been just over a year since then, and another autumn season has had me reducing down to 1.75mg for some months before having to return this time to only 3mg where I am now. I have been running for 1 hour 2x per week during this past year, which allows me to take fewer days off from getting at least an hour of exercise, and my hip bursitis and ribcage soreness are finally now several months back in the past. Only shoulder issues and periodic stiffness of my leg joints remain as noticeable symptoms.
The point I am making here in describing my course of symptoms and treatment is that there has been a yearly cycle to it whereby my seasonal (autumn) increase in athletic activities has consistently allowed a sharp decrease in my pred dosage level, so I have to wonder if maintaining a daily course of hours of intense exercise year-round would be a way to seriously hasten the pred reduction schedule. It would take serious commitment, effort and time, and might not work for everybody, but...
One thing that seems sure is that increasing one's exercise level depends on first taking a sufficient dosage of pred to control the inflammatory symptoms, as intense exercise would otherwise likely aggravate and intensify those symptoms. So achieving a lower pred dose may require starting with an increased pred dose initially, with the possibility of achieving reductions over time through regular exercise.
Lastly, I am male, 57 years old, currently taking 3mg/day after nearly 3-1/2 years with pmr, still very active. I'll be seing my rheumi on Monday for the routine bi-annual visit, so I just wrote down a summary for him. The significant progress to report this time is that 3mg/day is now doing what 5mg/day didn't quite achieve one year ago, and that my rib and hip-joint issues finally seem to have passed.
EileenH dan38655
Posted
I notice a major increase in symptoms with damp and cooler weather - less of a problem in the winter as if it is cooler then it is usually drier, the precipitation falls as snow!
I suspect the exercise bit is something to do with the mitochondria, I'm sure there is a mitochindrial element to the exercise intolerance - but we have no proof...
sandie60651 EileenH
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Windcense1 EileenH
Posted
Eileen, what is the maximum number of carbs per day do you recommend? I was disgnosed with GCA two weeks ago and like so many others was given no dietary instructions other than cut out processed foods, sugars, etc. Also, a HUGE THANK YOU to you and the others that have contributed to this board/blog. You're willingness to share your stories, failures, and successes has been a blessing to me as I start to educate myself regarding this illness.
EileenH Windcense1
Posted
I don't recommend anything - it depends on you and what your body can cope with. If I want to lose weight it really has to be almost no carbs - below 20g utilisable carbohydrate. Others lose weight at 50g - some don't even need to get far below 100g. Basically you choose a level - you don't even really need to measure, just be aware of what isn't really a good idea, and see what happens. If you lose weight, good, if you don't, then cut a bit further - rinse and repeat.
I eat massive amounts of leafy salads and above-ground veg. I very rarely eat bread, when it is half a roll from our baker - they are 30g useable carb, I just eat 15g. I don't refuse to eat carbs - I eat icecream, I live in Italy
I probably ate less when I was losing weight than I do now. But if I eat more than I should - I gain weight 
Basically it is like finding your dose of pred - what works for you.
Rimmy Windcense1
Posted
I started eating a low carb diet based on Eileen's suggestions as reiterated here and it has worked well for me. Having tried (like most of us I guess) some variation of dieting at various points in my life I have found in many ways a low carb is 'easier' - I have felt less hungry most of the time than I usually do when reducing calories fom anywhere and also that the less the carbs I eat the more likelihood of weight loss. I am also eating tons of veg and fish & chicken (I never eat red meat anyway). I also us plenty of good fats in stir fries and always eat an egg a day (or even two as we have tiny ones from our bantams). In 5 months I am 11kg lighter despite most of this time on high dose Pred for GCA. But the weight loss is from places atypical for me - my legs and hips mainly (I have always been a 'pear'
and I have still developed the roundish face. Overall however I think it has been important for me to feel I have some 'control' over what my body is doing and this has helped in a psychological sense too. Interestingly I am now able to eat a little more sometimes - an odd slice of toast with our own organic peach and ginger jam and my weight is remaining quite stable. After all as Eileen also says we also sometimes need 'jam today' !!
Best
Rimmy
Windcense1 EileenH
Posted
Windcense1 Rimmy
Posted
Thank you, Rimmy! I've always been a lover of bread and your organic peach and ginger jam on a slice of bread sounds heavenly. Alas, for now, I will have to use my imagination and not my tasebuds to experience that. Thank you also for descibing a bit if your diet. i had totally forgotten about stirfry. I've been eating a lot of raw veggies, so the thought of stirfry is exciting! Thank you again for taking the time to respond. Besides being incredibly informative, the members here are incredibly supportive. That's like a big hug just when you need it. Hope you have a wonderful day!