PMR newbie

[Dancesaver]

Hi last week diagnosed with PMR My ESR and CRP results were 78 and 83. Doctor commented that I have a very dramatic first attack being 60 reasonably fit and the pains in so many areas. Starting on 15mg pred but it’s wearing off after 8 hours so been advised to take 30mg. As nights and mornings are worse, has anyone had any extra relief by following antiflamaratory diet or alternative remedies?

[PMRpro Ambassador]

Hi and welcome.

I think jumping to 30mg straight away is a bit pessimistic and maybe trying 20 or 25mg first might have worked! However, you probably do need more. That the pain is back in 12 hours suggests you are the low end of the range the inflammatory effect of pred lasts - it can be anything from 12 to 36 hours. But that can be addressed later once you have this accumulated inflammation cleared out.

Were your symptoms also severe? There isn't really a link between severity and marker levels - they can be misleading. The fact nights and mornings are worse is partly due to the next batch of inflammatory substances is shed in the early morning, 4-4.30am, and until the effect of the next dose of pred takes effect they are rampaging around your body creating havoc in the form of more inflammation.

There is no single dietary approach that will make a great deal of difference - whatever the claims on the internet - but we do say to cut your carbs drastically, especially processed carbs and added sugar and limit fruit (healthy possibly, carby definitely). That will help reduce and even avoid weight gain with the pred and reduce the risk of developing steroid-induced diabetes. Contrary to what many doctors believe, they are not inevitable. Adopting a low carb diet does help the inflammation to some extent in that sugars and simple carbs tend to be pro-inflammatory - many people notice the difference if they adopt the low carb diet and then stray from the path for "treats" at Christmas or other parties. It's a bit like a carb hangover ...

This site is a really good and simple introduction:

dietdoctor.com/low-carb/foods

[fmkkm]

Hi Dancesaver,A good Diet does help. Several on this forum do low histamine. Many find low carb and sugar very necessary to control weight. I personally feel better when I cut out gluten and sugar. Keeping track of foods that make you feel worse and eliminating them is helpful which is what an autoimmune elimination diet will do. There are several of those floating around the internet.

Also, it’s important to reduce stress whenever possible, everyone will tell you stress will increase your symptoms.

[tangocharlie in reply to fmkkm]

I have to do low histamine diet as food and drinks with high histamines cause flares and allergic-type rections, and I also do low-carb and have managed to lose some of the weight gained from steroids in earlier years. If I stray much on the carbs I put on weight very quickly

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, so won’t add-except to say have a look at this -healthunlocked.com/pmrgcauk...

[piglette]

I became a nutrition nerd when I was diagnosed with PMR and given steroids. I was told that you could avoid the moon face by cutting out gluten and simple carbs and my nutrition mania started from there. I was also told I should cut out liquorice and nightshades, although I do have the odd tomato.

[tangocharlie in reply to piglette]

Did it work? I'd love to be rid of my moon face (my photo is an old one from when I was on lower Pred, I should update it)

[piglette in reply to tangocharlie]

In fact it did work, but apparently you must start immediately, once you have the moon face it is too late.

[PMRpro Ambassador in reply to piglette]

No - some of the fat on my face from methyl pred went on low carb so I no longer have a moonface - just chubby cheeks ...

[piglette in reply to PMRpro]

I have heard that the moon face improves at lower dosages too.

[MamaBeagle]

I was diagnosed in France where I was living at the time and GPb put me on 30mg. Magic bullet or what? Pain went in a few hours and after that I had an easy ride until I got down to really low doses. First at 7mg I think but sorted with help from here and then last year. My French GP did say take the tablets and you'll be over it in 2 years though!!!!🤔😏