Diagnosed in 2020 and started 15mg pred. It worked and I tapered - not perfectly - to stop in April this year. All seemed well then I began to get pain in my upper arms and shoulders in the early morning and this has become slightly worse over the past few weeks. Admittedly, I need a new hip, just received 2 stents but am otherwise very active for a 71 yr old and am off to cycle the Dolomites in a week. The pain only appears if I try to lift things and I am in slight denial that my PMR has reappeared because I don’t really know how to deal with it and at what level? Consult GP (hah! I should be so lucky) or rely on this forum? Any pointers gratefully received.
in Denial?: Diagnosed in 2020 and started 15mg pred... - PMRGCAuk
in Denial?
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51Highland
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PMRproAmbassador
Very common unfortunately - 1 or even 1/2mg is enough to keep the inflammation from overflowing and causing symptoms but going to zero pred is simply a step too far. If you jump in now, you will probably get away with a few days of 5mg in the flare protocol and back to 1mg almost immediately. Have you got some pred left?
I am now on tocilizumab, for the last 2 years or so, it allowed me to get from 19mg to 7mg. I have tried 6mg several times, fine for about 2 or 3 weeks and then bicep tendinitis raises its head again. Worse at first when I have lifted or carried something like you but after a few weeks it is there all the time and eventually it reaches my left elbow and then using my hands at all becomes painful. My rheumy is happy for me to stay at 7mg with 2 weekly TCZ.
Where are you coming to in the Dolomites? I live in Val Pusteria - drop in if you are passing!!!! Or are you going to Brenta Dolomites - the western side of the region. Hopefully it will have got the rain out of its system when you arrive - been the wettest May ever and the Giro had to be rearranged one day because of snow ...
Thanks for the swift response. I thought I had done it text book style going down .5mg every 4 weeks with the occasional hiccup. Clearly not to be.
Your advice is very helpful and I am most grateful. How long should I stay on 5 do you think? - assuming it all works of course.
I am staying in Badia for the week beginning 15 June, so a bit further west and hopefully dry by now. I went to the Pusteria valley last year from Cortina when doing the Via Ferrata. It’s very beautiful and you are extremely fortunate to live there. It’s 5 hours on a bike but who knows?
going down .5mg every 4 weeks with the occasional hiccup.
But many find the last 0.5mg takes a lot longer than 4 weeks… mine with GCA took a few months rather than a few weeks.
PMRpro has suggest your course of action… Hope it works.
Thank you Dorset Lady. Wise words as ever. The 4 weeks seemed to be going pretty well so I thought ‘give it a go’. And it was fine for a while. Hey ho.
We shall see….
Are you part of a group or on your own? Badia is just up the road - we could meet for a coffee. Or something more if I come on the bus which is free ...
There’s a group but I don’t know them. Staying in the hotel Melodia del Bosco. It would be lovely to meet you. I think the Wednesday 19th is a day off so please do come over and have coffee or lunch if you would like to.
That would be great!
Apparently Tuesday has now been designated the ‘day off’. Badia seems a bit of a one-horse town but it seems to have the essentials. You know the area better than I. The bus seems to work.
Everywhere up there is a one-horse town! Except in high tourist season when everything wakes up but there it is mainly in winter and skiing!
Um - that is most unfair, Tuesday isn't good for me, I have a hospital appointment early afternoon. Wednesday was free this week. However - what about coffee? If I get the 12 o'clock bus back I can make the appointment fine
We'll all await feedback from the inaugural meeting of the the PMRGCAUK Dolomites group! Enjoy your holiday and hope that your aches and pains s are sorted out before then.
This will be a second for me - Lorna Neil of the Scottish charity was staying in Badia some years ago and we met up!
How lovely!
A relaunch then?! Enjoy your lunch.
I fear so. Lunch will make up for it!
Obviously the place to be. I’ve never seen it without snow!
Not much left now - touched 22C in Badia this afternoon, 27C down here! Bit of a change this year - been foul, very wet.
The inaugural meeting of the PMRGCAUK Dolomites group was duly held in the sun at a cafe in the village of San Lorenzo di Sebato last week. Not much was talked about PMR but the discussion ranged far and wide. I can recommend the Dolomites as an ideal location for future PMRGCA conferences.
But to be fair - PMR was mentioned in passing!!!
For my part - a very pleasant morning!!!
Totally agree; there was sufficient coverage of the topic to merit the conference. I had a great time and thank you for your company.
Reciprocated!!! How was the rest of the week?
Very hard work but great fun in glorious sunshine and fabulous scenery. Cycled 160 miles and climbed 19,000ft over 5 days. Now recuperating in balmy Dorset. PMR happily under control so will continue at 2mg before tapering in 3-4 weeks. All the best!
Ha! Well done both of you in your efforts to establish an outpost. I hope that you both had a lovely time and that it was an enjoyable experience putting faces to usernames 😊
I bit the bullet and came off my prednisone in Feb, bit it’s been a hard road.. I’m so keen to stay off it as I gained so much weight which I hate and the pain is manageable, but it’s a choice I grapple with every day
It may be manageable now but it is likely to build up over time. And it isn't as simple as pred bad, no pred good. There is unmanaged inflammation rampaging through your body and it puts you at risk of other problems such as depression, cancers, cardiovascular disease.
That was my feeling exactly. But I’m going to follow the Flare protocol as I don’t want the PMR - or anything else - to regain its hold.
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