Wish me luck! : After many years of wondering... - PMRGCAuk


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Wish me luck!


After many years of wondering exactly how certain foods/food groups might be affecting my health and wellbeing I've finally decided to take the plunge and try to actually find out!

Up till now I haven't had a good support structure (or the courage!) to take this on but I've joined a course, which I've checked out very thoroughly, to follow the Auto Immune Protocol - AIP - starting today...

I know all about low carb and I know from experience how beneficial this is but I'm curious about other things like dairy and nightshades, both of which I love.

I'm not expecting a cure. I know PMR is in charge, and I know it varies from person to person, but I'm hoping to discover whether identifying and eliminating certain foods can make any difference at all, including with other conditions I have like OA and A/Fib as well as helping with weight, energy and just generally feeling a bit better :)

I'm asking you guys to wish me luck because AIP is challenging. Basically for the next six weeks I will be gradually eliminating certain food groups - specifically alcohol, grains, dairy, beans, legumes, eggs, nightshades, nuts, seeds, sugar, caffeine, food additives & chemicals - not necessarily in that order.

As well as eliminating these foods I will also be adding/increasing other highly nutritious foods and exploring other important lifestyle factors like stress, rest and sleep, exercise, socialising etc

After the 6 weeks' eliminating there'll be a (hopefully quite short!) period of maintaining that and then gradually re-introducing things to see what affect they each have.

Ultimately the idea is to then maintain whatever 'diet' I discover suits me personally. This is what I like about it, that it's specific to me and this particular body, not some general faddish one-size-fits-all thing.

So this week it's alcohol and grains. This isn't too challenging for me because I rarely drink alcohol these days and I already tend towards low carb, although I might miss the delicious spelt bread!

I'm excited, optimistic and apprehensive so please wish me luck!

I'll let you know how it goes...

(For more see: Wish Me Luck! Update #1)

41 Replies

Sounds fascinating. Look forward to your updates.

xdbx in reply to Cyclegirl54

Thank you!

You sound really motivated to do this programme. I will be really interested to hear how it goes for you. Best of luck!


xdbx in reply to linda49

I am at the moment but it's only day one! Thank you :)

Good Luck and looking forward to hearing how you get on :)

Fingers crossed xdbx. I think if there was a cure for PMR/GCA we wouldn't go on this voyage of self discovery but to get rid of this condition we'll try nearly anything. Best of luck to you.

Take care xx

xdbx in reply to BirmLiz

Thank you! I completely agree and I'm not looking for a cure for PMR. I'm pretty sure there isn't one! I'm just curious to see what difference this might make to my overall health and how I feel in general.

Good luck. I really hope you find something that you can eliminate that makes you feel better.

I think the positivity you can pull from such an exercise is valid. Sometimes we just seem stuck, take the preds, struggle on, take some more preds, hope for the best..... This way it’s like you’re taking back a little control, and that in itself is positive and can be expanded upon when your brain feels a little less fuddled and your muscles ache a little less.... who knows where it will lead?

And if all you do is lose a little weight, hey that’s good as well and increases your pred:body ratio :)

Do keep us updated.

xdbx in reply to Soraya_PMR

Thank you! Yes I do hope to lose a little weight and if nothing else shows up just that in itself would be good, and I'm glad to be actually exploring and checking a bit rather than just wondering about it and feeling resigned...

lynnmcguire24 in reply to xdbx

Very interesting.. because I've been interested in the Nightshades recently as they cause my restless legs & IBS. So, I've been doing my research on them as they are also inflammatory. Good Luck on your journey to Good Health...

xdbx in reply to lynnmcguire24

Yes we can be highly sensitive to nightshades as well as all the other pro-inflammatory foods. I still avoid them after 16 months of not eating any. I’m much better for it.

I’ve also lost around 50lbs in that time which has been a huge benefit! Wishing you well 🙂

Wishing you all the luck in the world! Keep us updated. What’s that old saying, “we are what we eat”.

xdbx in reply to MaryA_

Thank you!

Hi ... I hope you do well with the AIP diet...as you said it is challenging. I too have decided to take a different approach to help myself work with this disease. I have been on Prednisone since August and really need to get off of it ..so I decided to try dietary changes as well. I have been following the Paleo diet which is almost the same as AIP but not as restrictive. I've been on it for almost 4 weeks and have managed to eliminate dairy, all grains and refined sugars and all nightshades plus other foods. I am trying to work more toward the AIP diet which is not easy. In the AIP diet you are not allowed any type of nuts and no sugars what so ever. I bake some of my alternatives and the recipes call for almond flour and honey or maple syrup.....but I am constantly looking for new ideas and recipes. I will follow you and wish you all the best for success because ....this is learning experience..... good luck!


xdbx in reply to lizzym1

Thank you...and really well done with your Paleo progress!

I'm only on day one 😜 but I know it's going to get tough further down the line. I've got a pretty good support network set up now, which for me is important as I think it would be very hard on my own.

Like you say it's a learning experience and if all we do is learn something useful that would be good.

I'll follow you too and let's see how we can encourage each other 😊

Good luck!


lizzym1 in reply to xdbx

Hi Dee.. Hope all is going well. Now that I am a little over 4 weeks into mine I did realize some changes especially with the prednisone side effects. I haven't experienced the red hot flush, where my face and neck turn beet red .... the constant sweating and my skin seems to be smoother as well. I find I have more energy and I have been sleeping better at night. I am tapering off the prednisone and I am hoping I will not have a flare as I do so while I am I this diet. The big test will be when we go on vacation and meals out will be difficult.

How is your diet going... I hope you are doing well getting started, it can be difficult, especially when you have to switch over to clean foods. I really want to know how you are making out .... keep in touch.


xdbx in reply to lizzym1

Sounds like you’re getting some good results with the side effects :)

I’m tapering ultra-slow and learning patience following two flares in the last year and having to go back up to 15mg each time. I’m on 9.5mg now and in no hurry to go any lower until I’m really sure it’s ok and then I’ll try dropping 0.5mg gradually over a month or so.

I’m hoping the diet and lifestyle changes I’m making will make this easier.

So far I’m enjoying it and had some delicious grain-free meals and this morning I definitely feel a little less stiff and achy than usual. I know it’s generally recognised by people here that low carb is helpful so this is really no surprise. I’m also increasing healthy fats this week. Next week I remove nightshades and legumes...

I definitely think this very gradual approach in both the food elimination and the pred tapering is the right way to go for me. This way I can monitor everything very carefully so I can learn what works...and what doesn’t!

Good luck with your tapering too and keep me posted :)



I do know someone who felt very well on the AIP diet but was unable to cope long term with the restrictions and the complex shopping and food preparation it required for her. I can't even face the thought!!

I do wish you luck - but please do be very careful to be sure you have all the nutrients you require, especially protein and B vitamins while off grains.

xdbx in reply to PMRpro

Thank you! It's good to know someone felt very well on it. I'm sure I'll be meeting various obstacles further down the line but for now I can but suck it and see!

Thanks for the good advice re nutrients. I'll be very careful and optimising nutrition whilst taking things out is all part of the plan.

I wish you the very best of luck! Please keep us updated?

xdbx in reply to SheffieldJane

Thank you! I will :)

I have been on something similar since I started my treatment in decembre. I have lost some weight, have no puffy face or big belly. I don't know if I would have had it of course without my diet. I don't have any pain or noticable side effects either. Maybe it's the diet aswell. I wish you good luck! Have you joined any support group in real life or on social media?

xdbx in reply to Pirnilla

Thank you!

When you say ‘something similar’ do you mean AIP or maybe paleo?

Sounds like something is working for you :)

My support network is my husband and three close friends in real life and I’m in a closed FaceBook group with about 20 other people on the same six week elimination programme.

How about you?

Pirnilla in reply to xdbx

I keep off every fast sort of carbs, no pasta, rice and only sweet potatoes in small amounts. Try to keep off sugar, red meat and grains. I eat loads of vegetables (cabbage in all forms, spinach, celery, onions and others). I do lots of green smoothies with ginger, turmeric and lemon. I eat more fish, a lot of fatty fish. I Love this way of eating. My stomach loves it too! And I actually lost some weight even though that was not my goal at all.

I sometimes take a piece of really dark chocolate or make my green smoothie with cacao! 😊

It is so important to find ways to be inspired and supported in this. We need all the strength we can get!

As you can see I don't follow a diet, It's more like my own anti-inflam-way of life.

xdbx in reply to Pirnilla

That all sounds really good! I think I'm going to love it too.

I'm with you on the veggies and the oily fish and I'm a big fan of turmeric and ginger too. I have to be a bit careful because they're anticoagulants as well as anti-inflammatories and I'm on Warfarin but every couple of weeks I make a batch of little anti-inflam spice balls with turmeric, ginger and cinnamon all mixed in with finely chopped almonds, walnuts and dates. I throw everything into a food processor so it's easy, even with PMR! And it's so worth it :) I have one first thing in the morning with my pred dose along with a small glass of kefir. It's a really nice start to the day even if I'm feeling stiff and in pain!

Dark chocolate is also one of my treats plus it's got good health-giving properties :)

So yes, let's keep enjoying our own anti-inflam-ways as much as we can...

Wishing you a successful outcome, shall be following your progress.


xdbx in reply to fren

Thank you!

There is a book on Amazon about diets for PMR, good luck with yours!

xdbx in reply to stellafmdm

Thank you!

I wish you all the very best but should you find it difficult, you may want to consider finding a good kinesiology who will simply 'muscle test' you for any food intolerances. Kind regards

xdbx in reply to susieqleam

Thank you, and yes I'll certainly bear that in mind.

Sorry, that should have said kinesiologist.

All the very best- let us know how you get on .

xdbx in reply to Jackoh

Thank you, I will :)

I've looked at that but oh my giving up dairy makes me almost go into a panic mode. But I've heard from others that they felt better after giving it up. I'll be interested to see what your experience is with all of it. Best wishes!!!!

xdbx in reply to Insight329

Thank you! Yes it's interesting to notice which food groups we feel most reluctant to avoid, even for a short time. Dairy is one of mine too, and next week I have to cut out nightshades which I also love, so today I treated myself to some gorgeous Marmonde tomatoes (with cheese :) ) for lunch and I'll definitely be squeezing in a final potato or two before Monday!

I did a similar elimination diet (called “Whole 30”) where all those foods are eliminated for 30 days and then re-introduced one at a time. The re-introduction requires waiting 48 hrs. after eating the reintroduced food without re-introducing any other of the eliminated foods. This is because some foods give us noticeable immediate reactions while others produce reactions after they are in the blood. This proved to be a very important strategy for me as I had a delayed reaction to dairy and to wheat. Since I was on 10 mg. pred at that time, I repeated the experiment later when I had been finished with pred for 10 months. I got the same results even more pronounced without the pred masking my reactions. I don’t know if eliminating foods that trigger reactions for me helped me get off pred, but It may have. It still took me 2 more years to be in remission, but I had no flares in the 2 years, and I had 3 flares in the 3-1/2 years prior to the dietary changes. I hope you also have good results.

Thank you so much. It’s very encouraging to hear about your experience.

I also plan to do the gradual reintroduction after this initial 6 week elimination.

I’m currently on 9.5mg pred after starting on 15mg in Nov 2016. I got down to 6mg in the first 6 months but had a couple of flares since then and had to go back up to 15mg twice.

So now I’m taking it super slow with the tapering and looking at what else I can do to balance things out, including not only diet but also sleep and stress and other key lifestyle factors.

I really appreciate your response :)

Not sure if it's best to update here or to start a new post? Any thoughts?

For now I'll write something here anyway...

It's all going well so far. The meal planning is challenging but I'm starting to get the hang of it.

I avoided all grains last week and added healthy fats. This week I continue with that and also avoid legumes and nightshades, and add bone broth. I'm not vegetarian at the moment otherwise it might be harder to maintain a high level of nutrition without lots of supplements.

The course also looks at general lifestyle and one change I've made is to make a regular bedtime, with time allowed to wind down quietly before bed. I already had a regular waking time which I've kept. I'm already sleeping better and for more like 8+ hrs, and going back to sleep more easily if I wake in the night.

I've lost 5lbs, which I expected without grains, and I definitely have less pain and stiffness around upper spine, neck and shoulders 🙂

So far so good! 👍

That's great. I'm on that journey myself. Happy to know it's working for you.. & hope it will work for others.

xdbx in reply to lynnmcguire24

Oh good! I’m so glad because it’s a journey well worth making. I wrote that post in April last year and am SO much better in so many ways than I was back then.

I’m still following the AIP lifestyle with a few food reintroductions and I’m used to it now. It’s been a huge learning curve with amazing benefits.

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