Tapering

[Glassbox]

I was diagnosed with PMR in April 2023 by my GP. He put me on 15mg of pred reducing to 10 mg after 3 weeks. I had instant relief once I started to take pred. Since then I reduced my intake by 1mg every 4 weeks (or slightly less)

All went well with no recurrence until I got down to 5mg daily. I then noticed some discomfort in my left upper arm which has continued but not worsened. I am now down to 4mg daily with no further ill effects.

I am a reasonably fit 86 old man I walk 2 or 3 mils most days and play 18 holes of golf twice a week.

My question is should I increase my dose to, say, 6mg for a few weeks to try and shake off the residual discomfort or should I ignore the mild ache and continue on my downward track albeit more slowly? I have not been back to my doctor nor have I seen a rhuematologist. I get all the reassurance that I need from this wonderful website

[PMRpro Ambassador]

I can only repeat: you are not reducing the dose relentlessly to zero - you are tapering/titrating the dose to find the lowest effective dose for YOU. Pred cures nothing, it is a management strategy to keep the daily new batch of inflammation under control. If you go too low, then there will be a small amount of inflammation that isn't mopped up and, over time, it will build up until there is enough inflammation to cause symptoms. It is like a dripping tap filling a bucket and eventually overflowing.

You could try treating it as a flare - add 5mg to the current dose for a few days and then go back to the dose you were last good at. At a guess, if you were to settle at 5mg for a couple of months before tapering again, and at 1/2mg at a time, you might find it works to get you a little bit lower. But never push your luck - it almost always ends in tears!

[Sueloucam in reply to PMRpro]

Brilliant explanation.

[Bcol]

The speed of your reducing has never given you opportunity to get on top of the inflammation and as PMRpro says the "dripping tap" scenario has allowed the "bucket" to overflow. Get this one under control, as suggested, and then, when you start reducing after a couple of months or more, then 0.5mg every five/six weeks. Even then, don't start the next taper until things feel totally settled. Rushing at this stage wil end up with you being on more Pred for longer in the end. Whilst still having arm pain it may be worth considering reigning back on the golf for a couple of weeks. This is not a ailment that can be rushed.

[Polygolfer]

Hi there, I have a similar tapering pattern to yours and also play several rounds of golf every week and exercise a lot. I am now down to 3mg of Pred and so far so good.

I had some occasional discomforts in shoulders, wrists, hips etc. before PMR so I am expecting some of those issues to always be there anyway, especially once I rid myself of the steroids.

So, I would exercise caution and patience before resorting back to higher doses of steroids. Plus I’d only resort to increasing medication with medical guidance and supervision anyway.

It’s tempting to blame every discomfort on PMR or a flare or whatever but I’d say keep stretching and exercising and give yourself the benefit of time… only you will know if the twinges you feel are just temporary and exercise related or if it’s the PMR returning.

[Nymocaaz]

I had PMR several years ago, with severe pain in my upper arms, and complete inability to raise my arms. My rheumatologist prescribed prednisone, and gave me instructions for tapering every few weeks. I had regular blood tests to monitor inflammation. As I got to lower levels, I asked him if I would feel pain. He said “Of course. Prednisone masks all kinds of pain, not just PMR, so as you taper off it, pain from arthritis, old injuries, etc. will still be there.” He advised me to just continue reducing the dose as long as my blood markers were good. So I did, had some random aches and pains, but eliminated the prednisone and the PMR. I was very happy to be rid of both.

[Glassbox in reply to Nymocaaz]

Thank you all for your helpful advice.

Like everybody else, I imagine, I am keen to get down to the lowest dose of pred that I can, as soon as I can. However I acknowledge that I am not in charge - my body is.

I am tempted to follow the cheerful advice of Polygolfer. However I have been tapering rather quickly and a pause seems prudent. I have increased my pred intake by 50% -from 4mg to 6mg and I will stay on that for a limited time if it takes away the mild discomfort that remains and then start tapering again

[Glassbox]

Since I last posted six months ago I have tapered down to 2.5mg a day. The occasional mild discomfort in my arm remains -to remind me that PMR has not gone away- but my quality of life is fine. I will continue with a very slow taper.

A few weeks ago I had a bone density scan. Two out of three readings were fine, but the third, at the head of the femur, was marginally outside the safe range ( -1.3 when -1 and above is normal ) and osteopenia was diagnosed

I asked the G.P. if I could come off the alendronic acid. He said no, that it was necessary and Evacal 3D tablets would not be as effective without it. He said that any review would only be appropriate if and when I have completely come of pred.

I found this disappointing but I accept it. At 86 I thought that I was doing well !

However I would be interested to learn if any fellow "predites" have had a similar response

[DorsetLady PMRGCAuk volunteer in reply to Glassbox]

As this thread is 6 months, you will get more replies if you raise a new post. Only those that have saved this post will get a notification, whereas if you start a new one, everyone will see it.

Although osteopenia doesn’t necessarily mean it will be become osteoporosis, I can understand why GP wishes you to remain on AA - you’ve only been on it a year or so..and if you can tolerate it okay then stick with it - for now.

[Glassbox in reply to DorsetLady]

Thank you, Dorset Lady

[PMRpro Ambassador in reply to Glassbox]

If the worst of my t-scores was -1.3 you wouldn't catch me taking AA!!! Mine WAS -1,3 a couple of months after starting pred and I was told I needn't take AA. The -1,0 is the average bone density for a 30 year old. To have that at 86 is amazing.