PMRGCAuk
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Nutritionist visit

Finally had an appointment with a very highly regarded nutritionist this week for my pmr.

My diet (although would always have a decent dinner) consisted of a lot of bread and sugar. So he has instructed me to cut out sugar and wheat. I have also ordered supplements he recommended to help my new sugar and gluten free diet along.

He was very positive we can get rid of the inflammation so I’m more than willing to give it my best shot.

Currently tapering from 8mg Pred to 7mg. Had a few really bad days last week 😫 upper arms were like lead, sore shoulders and neck. Then upper back decided to join the party.

Will keep progress posted 🤞

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Good luck!

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Thanks 🤗

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Keep us posted on how you get on - I am always interested to find out if these anti-inflammatory diets work with PMR. There is very little evidence so far......

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I will absolutely 🤗

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In the beginning I cut out nightshades, added sugar, alcohol. Now I’m not as obsessive. I eat French fries on vacation and with dates! I really don’t see the relationship between diet and inflammation. However, careful eating def affects weight. Pred causes me to crave cereal. I do eat it daily and my weight is fine.

I think all this speculation about cause and effect is a way for people to make money selling books, giving talks and appealing to people looking to grab onto a way to control their illness. Feeling out of control with PMR/GCA is a horrible part of the illness,

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Add to your list all the "supplements" people make money off of us. And recommend over the counter. I keep buying things from Whole Foods, reading about them, and returning them.

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I’m sick of buying supplements! It really is throwing $ down the toilet. Tried Tumeric tablets then I stopped. Only ones I take are D and magnesium. Save your $!

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Me too same exact two.

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Read my post. Suzy. Refined sugar means. Instant back pain for me when standing up. Don’t know if it’s to do with bloating putting strain on my spine or what.

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"I have also ordered supplements he recommended"

No doubt he did - and makes more profit from them than from your appointment!!!! Cutting carbs as we advise here would have been a lot cheaper ;-)

Sorry if I sound sceptical - but one of the "highly regarded nutritionists" has a rather dodgy past...

Nevertheless - good luck with your new diet which is probably not a lot different from mine.

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I tend to agree re the £££

Allsgrandso what supplements are recommended?

Is weight loss going to be a positive? As I suspect you’ll lose weight with this diet. I did when I cut out all sugars, which for me was undesirable. I still avoid processed sugars but eat brown carbs.

I’m sure our C21st diet is wheat heavy, but I’m on the fence re wheat in ‘appropriate’ amounts causing inflammation .....unless of course you have a true allergy to either wheat or gluten.

But good luck. I think it is positive to have someone listen to us and take us seriously, and to be able to do something positive to take control of our predicament. Do come back and update with your findings.

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I avoid wheat - not religiously, there are things that are worth itching for - because it causes an eczema. And it is likely to be linked to the autoimmune part of PMR (said the local gut specialist).

But spelt, kamut and rye are OK as breads and barley as food so not gluten. It is something in the structure of the wheat starch - and I can eat Canadian soft wheat so eating French bread in France is fine :-)

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“And it is likely to be linked to the autoimmune part of PMR (said the local gut specialist).”

...for YOU because you have a known allergy? Or for everyone?

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My allergy to the wheat starch he thinks is due to the much-disputed leaky gut syndrome which he also thinks is a very a/i thing. His own speciality is coeliac - all interlinked I suspect, it is also a/i.

I am quite sure that ALL a/i disease is linked - what you get as a label simply depends on which bit of it goes haywire. Which is why there are so many overlap syndromes - each of us gets our own version with more or fewer expressions. To a great extent all they can do is manage the symptoms - so there is a major element of luck involved.

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Good luck with 100% spelt pizza.

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Soraya I don’t want to name supplements on here yet because there will be people who will go out and buy them and then maybe they don’t work. This plan is tailored for me and we are all different.

Although I have put on over a stone since July, weight loss was not a priority for me..getting well is. He never mentioned weight loss either.

I gave him a 4 day plan of everything I eat and tbh I was alarmed when I saw it written down myself. Toast and more toast, chocolate, jellies and then I bake a fair bit also. I ate very little veg and the odd banana or smoothie would be the total fruit intake.

I will most definitely update how it goes. 🤗

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That diet and pred would equal weight gain for most of us!

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Haha! I think you’ll feel better when you ditch all those ‘naughties’!!

I myself probably had an equally bad diet. Lethargy makes you (made me) grab whatever is quick and easy. Converting to slower digesting carbs, increasing salads (also quick and easy) and ditching the crap has evened out my energy levels.

Quite aside from trying to keep healthy with diet, I have discovered other changes. Oily fish pre-pred was an occasional meal, but it caused indigestion. Now I eat it like it’s going out of fashion...and no indigestion! Eggs I disliked, now I love them. Red meat is the one thing I can identify as making me feel not so good and ‘sluggish’. Easy to avoid processed meat and red meat. Chicken seems to been fine, but I limit meat now. I still give in to the occasional cream egg! It’s my hangover cure.....ok I should ditch the alcohol! But I keep it social for special occasions. We have to enjoy life too!

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The recent research,which I will try and find again, on going gluten free when there is no intolerance or allergy is supposed to be detrimental to your health.

If this helps you cut carbs and sugar I am sure you will feel better and hopefully using this nutritionist rather than just will power will help. Personally I would use the nutritionist service that my gp offers. I won't take anything before I run it past my pharmacy. Good luck.

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It is primarily because by eliminating all grains you lose important sources of nutrients. There is an interesting article in the Guardian - today there is an article about anorexia and a link is to "clean eating"

theguardian.com/lifeandstyl...

It is well worth the read.

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Thanks for the link, very interesting and informative. Bring back sensible eating maybe?

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And a desire for non-processed food. I know what is in the food I put on the table 90% of the time - I cook it from scratch. The 10% is food OH eats - and it is what he will eat. Having survived the Big C twice - who am I to complain!

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I cook from scratch too, I like to know what I’m eating.

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I don't actually have a lot of choice here - there are next to no "ready meals" in the supermarkets unlike the UK. Predominantly frozen pizza or pasta - in Italy????????

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Used to make own pizza before PMR. Daughter has a pasta machine nice but not sure it’s worth the effort at the moment. We have a lot of choice locally, I vote with my feet!

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I have made my own pasta using spelt and even buckwheat but so rarely eat pasta now it isn't worth the effort.

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I have the idea that if we adopted the shopping style of our mothers and grandmothers we would do well. I certainly try to visit the greengrocer, butcher etc rather than a one-stop-shop....which wipes me out and is too heavy to carry home anyway! Alternate day shopping gives me exercise, a load I can manage, and fresh produce. I hate supermarkets anyway, always changing the layout and using devious pricing and BOGOFS.

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One of the joys of our local supermarket is a SUPERB loose veg section. And since it was built the only changes are the seasonal ones. Woebetide them if they changed the rest of the layout!!!!

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Only 10%? He must be so fit!

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No - just doesn't eat anything...

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:( That's a little sad. I have a friend of mine (who had C). I gave her some books on post-cancer healing dietary books (one was published by a well-known cancer centre) a few years ago.

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That’s a very long read but worth it

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Absolutely loved the long article! It’s amazing how people jump on the bandwagon of the new latest and greatest without analyzing pros and cons. The young, beautiful and mostly blonde promoters make so much money “acting expert.” Many should simply be Hollywood bound!

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Part of it appears to be an inability to analyse the statements and the modern desire to ignore the people who really know - rather than the lifestyle journalist...

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I think people do read a single article on "special dietary protocol/expensive oils or extortionate honey" and convince themselves it would be a miracle cure (e.g. "oh, if I keep taking this...oh, if I keep taking that...") without any basic medical knowledge and even some "common sense". I often find that some well known medical websites are quite guilty of misleading naive consumers with incurable illnesses who have little or no medical understanding/background. These "medical" websites aren't absolute. Their recommendations are often disputed by REAL doctors, who know these websites are meant to be "consumers" not for doctors. I often think it's best not to disagree to upset these people, though. It's a cardinal sin to commit on a forum. It's a bit like a spiritual belief that they nurture and foster, best not to interfere with their "personal choice".

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Couldn’t agree with you more 👍

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Great advice. I simply state my opinion and expect people to do what they want! We’re all adults and don’t have to walk on egg shells. I did that with my Ex husband...that’s why we’re divorced!

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I cannot agree more. These passionate people would want you to convert to their "religion" e.g. start taking this or that, because "you just don't know what you are missing and probably you need to address the lack of your knowledge". I think they do mean well but it can be quite annoying. I also think it's wrong to advocate these "supplements/oil/honey" without relevant medical/dietary qualifications (PhD). Lay people shouldn't be allowed to covertly pressure into taking things, buying extortionate food items. . .

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Amen! It is also helpful to reign in enthusiasm for jumping on the latest and greatest of any new supplement or diet cure from those who have had the disease longer and are more rational and experienced. At the onset, we all want to believe we are being proactive and in control. PMR teaches us to give up applying our rules and learn to live in the slow lane.

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Absolutely Sandy however I’m kicking screaming and fighting the slow lane desperately, I’ve always been a very active busy person and at age 50 I just can’t give in!!

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50 is way too young for this illness! My heart breaks for you, I’m 70 but look and act much younger...probably because I’m petite! I am a chronic overachiever...doctorate at 27, business owner, top producer, on and on. Best achievement for dealing with PMR was years of working out in a hard core body building gym. The discipline has helped me really build back cardio and weight training very, very slowly. Movement helps my pain. Yesterday I walked 6 miles pushing my 13 yr. old blind, arthritic Coton in a stroller. Easy in NY....went from Union Square to Chinatown. Both took a nap then bed at 8:00!

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I read your profile and you have the most POSITIVE attitude toward this experience/journey. How to cope especially when we’ve always been active! You figured it out way before me.

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I really needed to read your post! Yesterday I got a $65 parking ticket in NYC. I thought I was so careful about reading the sign and checking that alternate side parking was suspended. I ranted to my son, said a swear word, blamed it on Pred and he said I was always edgy and testy! He suggested an attitude adjustment and studying the words of Joel Olsten (we’re Jewish)! I mediate, journal, exercise and explode! This is the best I got!

We all figure it out in due time. Acceptance of change and limitations is challenging. I take lessons from my old dog and read uplifting quotes daily!

I made roasted string beans from the site you mentioned. I ate a pound! Best thing I ever ate! Also had spiralized organic squash with a small steak. Then peanut butter with apple, 2 squares dark chocolate, then ramekin with cold (low sugar) cereal. I eat all night!

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Glad that site’s worked out for you. You blame things on Prednisone, I blame everything on the Shingles I had a while back. I was healthy before that. But this forum has enabled me to move forward with great patience, to an ultimate conclusion and what that should look like. I never got this visual from my doctor.

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Gaining perspective from fellow sufferers enables us to feel understood and able to try new things to improve our situation. The doctors don’t always feel our pain.

Sorry about the shingles. That’s a tough one.

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You can rant to me anytime. Your son doesn’t sound particularly empathetic. (I guess that’s a “guy” thing.)

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Pmrpro I’m a sceptic myself 😂 The supplements he requested I use were sent to me in an email and links to buy them on amazon or iHerb so he is definitely not on the make!! I didn’t mention names of any supplements or food as I don’t know what will happen yet but I have to give this a shot.

I rang my doc and she gave me the go ahead to work away.

I have been given Dr Chatterjee’s book ‘The four pillar plan’ and found it fabulous. Food being only one of the pillars we need for a healthy body and mind.

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The person I mentioned as "dodgy" has sold his company making supplements - but I have no doubt he still benefits from the company's sales!!!!

Oh yes - giving it a shot makes sense.

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It just makes me think of the thousands and millions of pounds things like slimming tea etc made and were complete frauds. And many a private well known practitioner without doubt have fingers in the pound pie.

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Dodgy past😖. Lol now curiosity is killing me.

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Amazing what some people believe!

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Thanks for that

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Are you gluten free or wheat free?

All wheat contains gluten; but not all gluten comes from wheat, it is also in barley, rye & spelt.

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I have to email him back today to clarify if I can have spelt and rye. Also honey (here’s hoping)

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Good luck, every little helps. Your symptoms sound flare-like. I’d stop for a bit. I’m stuck around there too. I am at the stage of tolerating 6 mgs a couple of times a week, 7 mgs the rest. Getting here was full of stop, starts.

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It’s tough isn’t it? Was getting me down big time last week. I’m a lot more positive presently ... fingers crossed for us 🤞

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A healthy diet is always a good thing... sometimes a difficult task. I went on a gluten free diet at the advice of a nutritionalist only to be told "NO" by my rheumy... gluten free is for Celiacs... cut back ... way back... but do not eliminate all gluten.

Also your pain from dropping 1 mg may be eased by taking 8mg one day and 7mg the next for a couple of weeks...by the time your body realizes that 7mg isn't enough you take 8mg and your body is again satisfied...this has worked miraculously for me... I am now on 2.5mg for the last month... down from 60mg (PMR & GCA)... it's been a long road to get here but I have never had to go back up except to the higher one that I was on. I see some people have to go way way back up and almost start over again because the body couldn't handle the decrease. I am praying to be off Prednisone by the end of this year... I will go ever so slowly.... decreasing by half a mg at a time... and alternating the old dose new dose...I don't care if I have to stay at a dose for 3 months as long as I feel good..I am the only judge of what works for me and how I feel.

I am not saying this will work for everyone but I have seen a lot of good results and I am living proof of my own. I also take a lot of supplements and take monthly infusions of Orencia for my RA.

I wish you well... best wishes.

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The forum recommends some even slower approaches to reduce the effects of a reduction! We know it works!!!

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Thanks Seabyrd, I’m doing the tortoise not hare method and so far it’s been working well for me 🤞 wish you well x

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I'm thinking he gave you substitutes for wheat & gluten and its meat & salads? It's harder when you're Plant Based. I would love more details as I am trying to gain weight. Thanks. I'm not big on supplements or over the counter ones. I keep buying them from Whole Foods and returning them after reading more.

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Cutting carbs made me lose weight (unwanted) so I re-added brown carbs (pasta & rice) and potatoes (simply because I’m part Irish and love potatoes). I regained the weight and now seem to be able to keep my weight where I want it. (I never choose low fat/diet anything, such as yogurts or cheese, don’t know if you eat dairy?)

What about avocados, nuts, dried fruits, all high in calories.

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Love my dairy Soraya! He didn’t mention anything about it so I’m happy. Love cheese and always choose full fat yogurt etc as it’s usually full of sugar if low fat 🙈

Yes avocado, nuts and seeds I eat too ... I don’t eat dried fruits as too much sugar

X

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Oh yes the sugary ‘low fat’ yogurts, yuck! All part of the fat is bad for you myth. I love my FF soft cheese, I must eat it daily. It’s to help my calcium levels, nothing to do with being a gluttton ;) (my story and I’m sticking to it)

The dairy question was aimed at ConventCassie who mentioed that she is ‘plant based’ and I’m not sure if that means vegetarian or vegan or....?

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I think fat is good for you it’s sugar that’s a problem 🙈 you have just reminded me I have no cheese in the fridge lol

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NO CHEESE!!!!???

Call emergency services ;)

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No fish, no meat, no dairy...strictly, vegan, I should think. Not sure if she eats soya? These diets are often seen as alternative and it appeals to autoimmune folks, it did once when was younger, but it could damage you if you are not careful. But when we are younger, it feels as if we are invincible and we do things as it seemed pretty cool. Wait till you hit a certain age............

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Whole Foods Plant Based No Oil means no dairy, no meat or fish, no eggs. (Vegetables, fruits, whole grains & nuts).

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All good ideas, but conflict for heart disease. (So far just BP). I am adding some of these things.

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I make my own bread so making oat bread and using gluten free flour and buckwheat flour for baking. Yes most definitely up the fish and veg, oranges, raspberries and blueberries too. I’m not into supplements at all but he recommended some to support my diet and I’m giving them a shot. X

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I shouldn't say this at all, but gaining weight is not a hard task unless you have some eating disorder, which happens to be another autoimmune condition. Weight loss could be a rheumatic drug side effects in which case you could ask your dr to reduce the dose. Full fat ice cream (you can get organic, vegan, vegetarian ones), indulge yourself if you haven't. If you eat this daily, very few people would stay too thin for too long. There are quite a few autoimmune patients who have the food sensitivity to nuts, dairy, wheat, food additives or artificial colour etc.

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Yes SUGAR will put on weight, but that won’t help the inflammation.

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That is true, but sadly, it's good for the soul, or it could well be my excuse.

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What supplement did he recommend?

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He recommended 4 different ones that I have ordered but as I said in a previous post, I don’t want to say what they are on here yet as they are tailored for me specifically and my diet and also I would hate people to go out and buy them and not get results 😫 x

I’m taking a chance with these changes I’m making and hoping to have good results but who knows??

I could be disappointed too

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What might be in wheat, besides the gluten, which makes some people sick.

scientificamerican.com/arti...

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Please keep us posted as to how you get on as I also had appointments with a highly regarded nutritionist for my PMR, one year later and a spend of a few hundred pounds I feel no different. Perhaps a bit lighter around the tum and backside but that's about all. I guess we would all try something if we thought it would help with our PMR but for all those thinking of trying this one...forget it. The Preds are all I have found to have any success at all in treating this monster of a condition but one I have learnt to live with as its a wasted energy trying to fight it. I do cut out carbs as recommended on this great forum and if anything this certainly works for me...and does not cost me money ! Good Luck anyway.

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Ah sorry to hear that 😫 I’m thinking/hoping each case is different. All this effort and expense hopefully will have some results and if not at least I know I tried 🌸

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Fingers crossed for you Allsgrandso

You said above that you feel more positive, so that’s one good thing. You’re trying to take back control, which is also great. Let’s hope it snowballs for you.

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Thanks so much Soraya 🙏 a bit of control would be good alright, wish you well too x

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Yes you are right. each case is different and like you I wanted to try different ways of coping with PMR. I think the nutritionist I went to did not have a great understanding of PMR and was more for nutrition in general. I did lose weight which wasn't a bad thing so my money was not entirely wasted. I hope it works for you, keep us posted. x

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Thanks mzz I will indeed update 🙏

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I like the brown carbs idea. I’m Whole Foods Plant based no oil. So that means no dairy or meat or fish. I don’t have time to make bread working 40 hours a week, but I do have a great chocolate cupcake recipe where you grind the oats. Just use date sugar, peanut butter & bananas. So good.

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Hmmmm sounds good will have to try that thanks Cassie 🙏

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Please send the recipe! I want a cupcake for breakfast! My daughter in law made brownies with a mix and added yogurt. It was OK. Not sure about sugar content.

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Showmetheyummy.com

Healthy Chocolate Banana Muffins Recipe

I use date sugar & never have enough bananas - add some applesauce for the rest Also don’t do that chocolate chip thing.

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Can I use regular sugar? Never heard of date sugar. You’re very fancy!

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Sure. I get it on Amazon. Expensive but ground dates so no sugar. Use whatever the recipe says.

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Dates contain sugar - it is still sugar.

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OK. Will do. The site is great! I printed out 5 recipes! Decreased Pred from 12 to 11 yesterday. Resting today after walking 2.5 miles in NY and shoveling the end of my driveway in NJ because the plough blocked me in and I can’t leave my car on the street.

We’re you ever in the Convent?

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Shoveling? :(

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Just a small area. Easy peasy!

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Yes. Not like you think. When I was serving in the Peace Corps in Brazil my leader had arranged for me to stay in the Convent until I found a family to live with. (This was the early sixties.) But he told the Mother Suoerior I would be there for two years! I didn’t mind, but I was locked in when I wanted to go to daily mass! I was only there a month, but the stories got around Bahia & I was “famous” sorta.

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I guess, the difference is it's natural, not the refined, white sugar out of a standard packaging. Date sugar may be packaged in a brown, rustic looking bag or carton with some funky design, which appeals to vegan people. It's marketing, but I bet the taste has more flavor and yummy date sweetness to it.

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Thank you. Bananas have “sugar” & so do dates. Jeez they’re fruits. I prefer that sugar (which is absorbed differently by our body) than the “refined”.

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Brownie normally have sugar you may not even want to know, depending on how many slices.

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Hello there Allsgrandso,

This has been an interesting forum and I read the posts with great interest. So, I thought I'd put in my 2 bobs worth as well. Firstly good on you for trying something out of the box, I hope you can get used to the change and start enjoying it as much as I am. I changed my food intake when I was diagnosed with GCA/PMR. I am a researcher by nature and have to find the answer to whatever I don't know, so when I couldn't get much help from Rheumy I went looking. I believe diet is everything and we get sick in the first place because we have been putting the wrong foods into our body as well as stress. You can't always change the source of stress but you can change your diet. For the last year I have been seeing a nutritionist with fantastic results. My Pred is down to 5mgs and slowly reducing, I have stopped sugar refined carbs red meat gluten and eat as much raw veges as I want. Everyone's first reaction is "yuck" but for me health is more important than indulgence and now I can't go back to the old way. If I get a sugar craving I have a little honey or fruit and then I'm fine. I take supplements and I won't stop anytime soon because I can see the improvement.

The important thing to remember is all or nothing. If you try to do it both ways, ie. new diet AND old diet, you won't see a change and you will become discouraged.

Someone commented that there is no evidence to support that this reduces inflammation, but thats not true. There is heaps of material out there if you are looking.

Stay strong, it won't happenb overnight but it will happen.

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I can’t tell you how much your reply means to me today❤️ I was feeling very down trying to get through a boring salad with what I could find in the fridge 🙈 the thought of absolutely no sugar whatsoever and if I must only a little honey...well it was depressing!

I’ve perked up since, still stiff and sore but my sis dropped over a recipe book and dragged me into town to look for more books to get me excited about food🤗

Fantastic to hear you are enjoying your food and delighted that it’s working for you.

I’m sticking to it religiously like a dog with a bone 😂

Thanks so much, your advice is very much appreciated 🙏🙏🙏❤️

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I bet nutritionists aren't eating salads at home. Personally, I wouldn't go on any diet in February. But if you do, my hat's off to you. Women need to be fuller, they say, and they live longer in fact. It's proven. If you are too thin, like models in magazines, eating no oil, not enough this or that, they die young.

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Oh I’m getting plenty of good fats and it’s not the intention to get thin, it’s my intention to get well through an anti inflammatory diet supported by supplements. There’s lots more great food to eat I just have to discover it. It will take time. I had a lovely chia seed cacao pudding with raspberries after dinner and it hit the spot as well as being good for me.

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How pleasant. :) wishing you all the very best.

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Thankyou anothermember 🙏 wishing you well too x

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☀️😊🌺🌺

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Allsgrandso don’t put up with boring salads! I love salads and I chuck all sorts in! You deserve to take yourself to the shops and stock up with yummy-healthies so you can keep your determination going!

Cauliflower, yuck when cooked (unless enveloped in cheesy loveliness) is a crunchy peppery delight when raw. Zingy watercress. Celery, the perfect shape for stuffing with soft cheese. Sweetcorn. I’m going to try pomegranate in my salad when I spot one. Oranges? Figs? Got to be worth a try!

My fave quickie lunch is brown rice (warm) whatever salad I have, topped with a tin of mackerel. Easy, super quick, and for me it is comfort food. Wrap self in blanket, lounge in front of TV, and eat!

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Have you ever tried roasting cauli and broccoli? Grind herbs onto it and drizzle with olive oil - yum!!! I roast radicchio too and grilled lettuce is good if you have a Little Gem heart available.

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My cauliflower is all eaten raw before it gets to the oven! But I’ll try those, I roast all sorts of roots. Worth a try with radicchio as I don’t lose like the taste raw, maybe the roasting will remove that bitterness?

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Brussels roast a dream too - best with butter I think. I love radicchio, I get the choice of 3 different sorts here! Chicory/endive too. Courgettes - I'll try roasting anything!

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Hi Allsgrandso, I am with you!!

I loved all the wrong foods and wore the 25 extra pounds to prove it. In Dec 2017 when I was in a full flare the first doc I saw put me on the 5 day steroid pack which cleared up all my pains. With the first pill of that pack, I decided to get the extra weight off my painful joints so I swore off processed sugar, white flour, dairy, and processed foods. Got in to Rheumie in early Jan 2018, learned about PMR and inflammation, started 15 mg Pred. Tests showed extremely high out of sight Sed Rate and CRP. Stayed on my food choices and bought supplements recommended by Nutritionist. Side-effect of new diet: lost 20 lbs. In Feb, my blood tests were so low in the normal range it is amazing. Doc was thrilled and I am starting the taper. I have no idea if my diet affects those blood test results. I feel so much better in thinner clothes and not bloating. I still have PMR, but I am paying attention.

We are all different and I support we each do what works for each of us to deal with this.

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