I’m new to the forum. It’s a great resource so thanks to everyone involved.
I’ve already learnt that it’s normal to feel tired each time you taper which no one explained.
I’m a mum of 4 and
I was diagnosed with PMR in Jan 2022 after 5 months of back and forth with GP and consultants. I had sudden onset in September 2021 and went from walking and yoga to shuffling and not be able to move my arms v much. My mum had GCA but I don’t as yet. The prednisone has really helped the pain and fatigue and cutting back from full time work has allowed more rest. I’ve managed to taper with a bit of up and down from 15mg to 8mg but feeling twinges so that might be it for a while.
I’m wondering if anyone has tried a Wahls or Autoimmune protocol diet to complement the steroids and if so are there any tips etc.
I can see a long tail time wise in the posts of people getting below eg 8mg to 0mg and was wondering what I can do to give myself the best chance of coming off the steroids within a year or two.
Many thanks
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Rynn33
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Thanks for the links - very interesting around adrenal aspects and hadn't considered that at 8mg.
I appreciate the advice not to push myself too hard to "get this over with" as its a part of my body I can't control (!) so unlikely to be that straightforward.
it may be straightforward, it may not be - but it’s not quick, that’s for sure. You can do lots to help make it easier, learn as much as you can -and realise sometimes you have to say NO. That’s not a sign of weakness as others may think, it’s you being sensible.
Good luck, and remember there’s always someone around to help should you need it.
I am assuming that the Wahls or the autoimmune protocol diets are designed to build up up a weak immune system. Our issue is that our immune systems are over actively failing to recognise our systems as our own and therefore attacking our own bodies as if they were an external threat. Prednisalone switches off this damaging reaction to prevent serious harm from out of control inflammation. Therefore any supplement or diet that seeks to strengthen our immune response would be bolstering a faulty system and working in direct opposition to the medication.
The diets we follow seek to minimise the collateral damage that steroids can do. So low carb is recommended because the weight gain brings with it many health problems such as diabetes , hypertension etc. It is essential that we take vit D supplements that should be available on prescription alongside Calcium. Vit K2 helps the absorption.
These are my thoughts on the subject. My diet has continued to evolve as the disease progresses and is informed by my negative reaction to certain foods as time goes on, such as sugar, gluten and highly spiced or acidic foods for instance.
I have recently started a low carb regime as I'd been putting on weight since Feb and that seems to have reversed most of that which was heartening -- after reading around how steroids affect body and also being menopausal as well in the mix.
I was looking at the diets in terms of anti-inflammatory benefits (e.g. low white flour / sugar / processed foods) although others are using them to boost immune response - but if you take them "to the max" there's a lot of bone broth and kale and that would be a big change for me (!).
I had a course of high dose Vitamin D prescribed by the Rheumatologist as looked borderline low in bloods - that seems to have worked - and I'm on Calcium+Vit D supplement and Alendronic acid and thankfully my Dexa scan was all good so far.
Sounds like sticking with the low carb and keeping the inflammatory foods to a minimum is a good approach.
I read all those books like the AIP solution and was full of hope that changing my diet would 'cure' me. Unfortunately not, in my case, all the things advocated like bone broth, pickled and fermented foods etc disagreed with me as I learned from teh experiment that I'm very sensitive to histamines, which are in many things they advocate in the books. It did make me clean up my diet though, I have very little processed food, and that can only be a good thing. I have generally gone for a low-carb way of eating which meant cutting out wheat and sugar though I don't think I have a problem with gluten. I haven't managed to give up dairy. The jury is out on whether you need to give up nightshades, there does seem to be some evidence. I know a couple of PMR sufferers who also have other things going on eg MS who follow the Wahls or OMS diets and say it really helps. All these protocols are basically about eating 'real food' so are pretty healthy diets, and they overlap a lot. Discovering histamines trigger inflammation for me is useful to know. I had an over-active bladder problem now dx as painful bladder syndrone or IC, controlled with h2 blockers and the uro-gynae consultant says they see this a lot with auto-immune illnesses. The IC diet recommended is similar and overlaps with other diets recommended eg paleo. The most useful thing I did was keep a food and symptoms diary for a long time to see what triggered inflammation as diet is a personal thing. I keep trying to do keto but it's impossible on a high dose of steroids. Let us know how you get on
I've started a low carb diet and as you say that does end up being a version of the "lighter" level of Wahls etc.
I did food allergy testing recently -- I know the jury is out on the accuracy of those online tests but thought I'd give it a go -- and it surprised me a bit as I'm not allergic to gluten but to wheat proteins and highly sensitive to spelt ( which you think is a good guy) and also to soya which again can be seen as "good" and intolerant of egg yolks and some other fish and veg. Dairy and gluten in theory are fine.
It's interesting you mention histamines as I'm in a family full of asthmatics/eczema who end up using anti-histamine medicines a lot during the year. The IgE reading on that allergy test was the highest 5/5 so might help me to look into that more.
I know its unlikely to reverse any full blown PMR but maybe it will help support the meds etc.
I'd keep a food and symptoms diary to see what you are sensitive to. From that I tried to work out what all the trigger foods had in common and it was histamines. But then trying to get help on that was impossible, Immunology are only interested in classic immunoglobulin (Ig) allergies like nuts, though they did prescribe Montelukast and sodium chromoglicate which are mast cell inhibitors. I suspect (and so does my rheumie) that it is something to do with mast cell activation but there is no pathway for that on the NHS and long waiting lists for the few private doctors ith an interest in it. Demand has boomed with the number of people suffering long Covid, the symptoms of which seem very similar. I've written posts on my histamine intolerance research if you do a search. There are a few of us on here, and there may be a connection with autoimmune illnesses. Steroids seem to help dampen down the responses so someimes it emerges as people get to low doses of steroids. All very curious!
I have always eaten a healthy diet. When I started prednisone I became more strict with myself. I don’t eat any sweets or bread. I never gained any weight on prednisone even though it was redistributed. Eating healthy may make you feel good but it did nothing to help my GCA. I wish you luck but I feel when these diseases go they will go in their own time
I' m seeing the common theme of not rushing and "submitting" to this process in a sense.
These are the first tablets I've been on apart from antibiotics in my life and I don't like being on tablets with these side effects but I can't get away from the fact that they have totally helped me get back to a more normal routine with my family.
I'll stick with the low carb anyway as it is helping my weight management.
We'll compare notes in a month's time! I've stuck closely to low-carb this week, no sugar/pasta/bread/rice and do feel a lot better, and as a bonus lost a few pounds in weight which gladdens the spirit and step, I can feel a difference already.
There may well be something in the theories about a 'leaky gut' causing diseases, eating for your biome means eating for your physical and mental health, cutting out things that may be toxins like the nightshade family (including potatoes) might help. We just don't know, and what's right for one person may not work for another - this is what they are finding out in twin studies looking at the microbiome. I think it's all fascinating stuff.
I became a nutrition guru when I was diagnosed with PMR and started on steroids. I suppose I went more for a healthy diet although I did cut out gluten and simple carbs as I was told that would stop the moon face. I got an app that worked out if you have had your vitamin dose for the day too.
You have got to the point at 8mg where you will be coming up to the point where your adrenals have to start waking up which is a whole new ball game.
"[I} was wondering what I can do to give myself the best chance of coming off the steroids within a year or two."
I'd say the first thing would be to try to get out of that mindset - because it happens so rarely that setting your heart on it will just lead to disappointment. It will lead you to try to force reductions in the dose - and that will result in flares and a return to higher doses which is exactly what you don't want.
We do support a low carb diet - because that is realistically the best way to reduce the weight gain associated with pred. It is also antiinflammatory - sugar and simple carbs are pro-inflammatory. Other than that, I would say that everyone is different. And even all the versions of AIP diets and whatever claim different things, I cut nightshades - and all it achieved was a more boring diet, no difference in the PMR. I was already gluten-free - as were others on the forum, when they developed PMR. I have cut dairy in the past - no effect. Like many I probably do feel better on lower carb - lots of people say they can feel it when they stray for a birthday or other celebration.
I think as you say its key not to rush down the levels and create a bigger issue. My rheumatologist has said if that if the steroids don't taper down within 1.5 years they will move onto other medication but it sounds like that's not necessarily a way to go -- I guess I can cross that bridge next year.
Before my diagnosis over the 5 months of pain/stiffness I was trying gluten free and turmeric etc as I thought it was OA/ menopause -- but they weren't a magic bullet and the steroids had an immediately beneficial impact.
I've recent started low carb to lose some of the weight gain and will stick with this and general anti-inflammatory.
Given the number of patients who don't get off pred in 18 months, you are left to ask what they find works better. Because if something does - why aren't they showing that properly and then using it?
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Is PMR always bilateral?
Very tired after minor op
Is it posture? Cold? A flare? Or something else?
