New to PMR: Hi, I'm new here. Diagnosed with PMR in... - PMRGCAuk

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New to PMR

budnmag1062
budnmag1062

Hi, I'm new here. Diagnosed with PMR in January 2018. On 35 mg of pred at this time.

Thank you for all your sharing ,helping me to understand this condition that seems to have come out of nowhere.Thought I had the flu but after 2 weeks and getting to a point i could not even turn over in bed without horrible pain everywhere realized i needed to see the DR.

13 Replies
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Hi budnmag1062 and welcome to the forum. I’m glad you’ve got a bit familiar already. It’s great isn’t it!

You are on a very high start dose for PMR, it’s usually around 20 mgs. Did your doctor suspect Giant Cell Arteritis and you’ve now reduced to 35 mgs?

Hope to hear from you.

Hi ShffieldJane, mo my Dr started me on 40 mg . I was down to 35 mg but due to back pain we went back to 35mg. I see her again before the end of the month to go over and get bloodwork again, we are doing monthly at this point. As of yet she hasn't mentioned GCA. So i will ask agaib when i see her. Thanks so much.

If GCA is not suspected. I would query your dose. 4 months is a long time to be at that level of Pred. I would be wondering if something else was going on with your back.. 35 mgs should really mop up all pain from PMR and even other pain too. Are you on other drugs too, like Alendronic Acid ? Some drugs cause pain, like Statins for instance.

Hidden
Hidden

So sorry to hear about your diagnoses. You will find this site and it's experts invaluable! I wish you lots of luck on your PMR. Journey and hope for a speedy recovery.

budnmag1062
budnmag1062 in reply to Hidden

Thank you , I'm still learning what PMR is all about. This site has been a great discovery.

Welcome to the forum. Your experience sounds much like mine. With a pretty swift diagnosis.

I see that SheffieldJane has the same question. Just curious why you were started at 40mg and why you are still at 35.

Not all pain indicates a flare. Some pain is due to Pred withdrawal, some bursitis and some myofascial syndrome. But it was certainly hard for me to figure it out. My ritual was to see if I could raise my arms fully over my heard when I awoke in the morning, and touch my toes. Two things I was unable to do when PMR set in.

From what I’ve read hear, other factors are sometimes involved. Some people don’t metabolize Pred as well as others so the effective dosage is actually lower. Some do better on prednisolone that prednisone.

The experts will be coming along to give you more information.

Sorry to hear about your diagnosis but you are in good hands here. I was diagnosed November 2017 put on 30 mg of Pred initially which got rid of the pain and with slow reduction am now on 10mg. It does take a while to get your head around the change it makes to your life but the best advice I have gained from here is to “be kind to yourself” and “pace yourself”. Keep checking into this site as I’m sure you will you will find the support invaluable 👍

Listen to the experts on here, they are amazing! Your diagnosis sounds like mine, I left it and left it thinking it would sort itself out but after umpteen days of trying to roll out of bed and shuffle to work took myself to drs! Had esr of 130 and put on 40 mg this was October 16 managed to get to 8.5 now going for half mg reduction every month. Look after yourself and take it steady 🤞

PMRpro
PMRproAmbassador

You shouldn't need a starting dose of more than 25mg for PMR - if you do, then there has to be a query about the diagnosis. Some forms of inflammatory arthritis can present just like PMR - and that is what should be considered when you require higher does to get a result (and obviously you start low and go up not high). 40mg is the bottom of the range for GCA and a lot of things would respond to it. The other clue tends to be difficulty in reducing.

Even at the usual starting doses of 15-20mg for PMR you shouldn't be left at that starting dose for more than 4 to 6 weeks before trying a reduction - and 5mg at a time is too much in PMR. But leaving you on that level of pred since October is not good - she should be putting her thinking cap on.

You know it does occur to me that if this is the usual way of managing PMR in the USA - no wonder they are terrified of leaving PMR patients on pred!

Hindags
Hindags in reply to PMRpro

From my experience, it is not usual in the US. I was started at 15, put up to 20 after three weeks, then tapered from there 2.5 mgs at first then 1mg at a time. One mini flare @ 14 at the four month mark, now at 16 months at 6.

I think that’s about average?

PMRpro
PMRproAmbassador in reply to Hindags

Probably - but I have come across some very strange stuff recently!!!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi, and welcome

healthunlocked.com/pmrgcauk...

Have a look at attached, may help. Like others, I would query your starting dose for PMR.

Hi budnmag welcome to this amazing and very helpful forum. The high dose of preds you are on should have relieved all the pain you were having and l cannot add to the previous posts,all very good information. I hope everything works out well for you very soon.

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