Thanks for the informative information

[Wcg1]

Hello, I was diagnosed with PMR in August 2018, started on 15 mg pred, which worked like a dream. Been tapering ever since but have found it very difficult from 10 mg downwards. Now stuck on 7 for a good few weeks after having a really bad flare. That was when I, thankfully, found this forum, I had been searching around for info and advice for some time but not found anything helpful. Although diagnosed 18 months ago I think I have had PMR for years, it used to be an isolated event that would last a few days and then go away, often for months, and seemed to be triggered by some repetitive activity. In the last two or three years it became an almost constant pain - always in the muscles in my back - mostly round my shoulder blades, but then spreading right across my back - excruciating! I was so glad to eventually have a diagnosis and my GP is great, advising but letting me manage the taper myself and never urging any hurry. She has now suggested trying to cut down 1 mg a month. Like so many others I now have pred induced type 2 diabetes for which I have been prescribed one metformin a day - but experiencing some swelling in my feet since being on it - especially in hot climates (in the Caribbean at the moment and having trouble so have stopped taking the metformin, which seems to have made a difference - will discuss with GP). I have managed not to put on any weight with the preds and since the type 2 diagnosis have managed to lose four kilos - mostly by cutting carbs and calories - still working at it. I have been so grateful to be able to see that others have similar problems and to be able to access lots of wise, informed, advice. Thank you all so much, it’s great not to feel so alone in all of this. Happy, healthy Christmas everyone. 😎

[DorsetLady PMRGCAuk volunteer]

Hi,

Lucky you being in Caribbean!

When you next see GP suggest tapering 1mg every 2 months, or 0.5mg every month (same difference - but below 7mg sometimes it’s easy to do 0.5mg a time). And if necessary a slow tapering plan such as attached - healthunlocked.com/pmrgcauk...

Others are available.

Whatever makes life easier for you!

[Wcg1 in reply to DorsetLady]

Thanks, will try this.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

This is another slow approach to tapering.

However - is your doctor sure this is PMR? What you describe sounds more like palindromic rheumatism which can also first appear more PMR-ish. There is another lady on the forum who has had that diagnosis - also first diagnosed with PMR.

[Wcg1 in reply to PMRpro]

Having looked up palindromic rheumatism I don’t think that fits my symptoms at all, I don’t get joint pain and have never had any swelling or redness. I have perused the symptoms of PMR quite extensively and they do seem to fit. Although not permanently in chronic pain in the past, I have suffered with stiffness and muscular aches and pains for a long time.

[carolBF in reply to Wcg1]

I can relate to your symptoms I too found in the last five years if I really pushed any one activity really hard I would be in loads of pain but it would clear up in a week or two . A year ago I was working really hard on a stair master which had steps that were far to deep for me which affected my hips. Not been right since.

However I also find that if I don’t do a small amount of activity I am very restless

Hope you have good Christmas

X

[PMRpro Ambassador in reply to Wcg1]

That's fine - but it is unusual for PMR to come and go as you describe and PR can be just muscles early on. Maybe this is another version for the records ...

[SheffieldJane]

Wow! The Caribbean. Lucky you! Get those feet up and keep cool. It sounds like you are managing this well. Have a lovely Christmas and New Year!

[Rich7]

“Like so many others I now have pred induced type 2 diabetes.” Really?

I was beginning to think I knew most of the side effects of prednisone, but that one seems to have slipped between a couple of brain cells.

I’m posting this on your comment, but using this opportunity to ask the forum...Can I expect to develop type two diabetes having been on pred for years?

[PMRpro Ambassador in reply to Rich7]

It is NOT inevitable I have been on pred for over 10 years and my Hba1c level is in the high 30 mmol/mol. Normal range is below 42 mmol/mol (or 6.0% in other countries). It should be checked every 6 months or so by your GP so that you can take action if it starts to rise.

Pred triggers the liver to release spikes of glucose from the body's stores - that adds to the level caused by any carbs you eat. Many of us have cut carbs drastically since being on pred and avoided/lost excessive weight gain - and in most cases, any weight gain. That also reduces the risk of developing pred-induced diabetes.

[Jackoh]

Happy healthy Christmas to you too. You seem to have done so well especially with controlling your carb intake. X