I have only posted a couple of times, mainly because any queries I have had have been answered in other peoples’ posts by you amazing, knowledgeable and so very kind experts.
For 2 years I have struggled with my PMR. Desperately trying to stay on a low dose which in my heart I know is wrong. I am fine walking the dog and light housework but gardening, ironing, anything involving lifting eg making heavy curtains causes a lot of pain later in the day. The worst is now in upper arms, breathing muscles, hands and a lump at the top of my chest. Coughing or sneezing has to be avoided! I am on 5 mgs at the moment which I take with yoghurt at around 3.00am but at no time during the day am I totally pain free and in a lot of pain by the evening and in bed.
I suppose my question is; should I follow flare protocol? Up 5mgs for a couple of weeks then go back to 5 or, given that I have been struggling for 2 years perhaps reduce slowly from 10?
Sorry for the long post.
Written by
Mahler2
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Flare protocol maybe - but NOT back to 5mg because that is patently not enough. What was the last good dose? You might even find that even just 5,5mg is enough to improve your QOL - and I don't think you need much more because a miss is as good as a mile and you aren't totally unable to function so you are clearing out a fair bit of inflammation each day.
I would do the flare protocol and then try 7,5mg if the 10mg really did result in minimal pain - that might be plenty and halve your longer taper. If it isn't - you know what you are looking at better.
Thank you so much for your swift, detailed reply . I will do exactly as you advise. I just don’t want to go through the fatigue etc of going above 7.5 for too long. Hopefully the adrenals won’t notice for 2 weeks.
Flare aside, once I got to low doses and with GCA only, I found my upper body to be super prone to muscle overuse. It seemed for a few years that my upper body would complain if I did any repetitive strain.
Of late (4.5 years since stopping Pred) I have been treated for upper rib (1&2) issues mostly from poor posture at the keyboard and being pulled by the dogs. The issue is when they decide there is a fantastic smell and suddenly stop, pulling my shoulder just a bit. Add to that things like weeding and hoovering and I ended up with a suite of symptoms with my neck, shoulders back and upper chest. I even ended up with thoracic outlet syndrome.
I say this because not only are you on borderline enough Pred and you are putting your upper body through quite some grief. It may be worth at some point if you can seeing a good osteopath or physio, especially if you find upping the Pred clears some but not all of your issues in specific places.
Thank you for your great advice. It all sounds exactly right for me. I was a professional singer for 20 years then taught and directed choirs for another 25 so posture not great from sitting at piano keyboard. Also I just can’t resist digging in the garden as it’s new to us and needs far too much doing. Somehow you think it will ok if you just do an hour or so… !!
Yes, with regard to gardening. I think we’ve all been there at some stage, and, even now after two years in remission, I still do too much gardening at a time.
As you will be well aware, PMR needs lots and lots of patience, together with lots and lots of tlc!
How right you are. If anyone has any patience going spare I could do with some. I do receive tlc from bh, the dog and 3 cats it had to be said. Thanks 🙏
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Is this a flare?
What is a FLARE? and when is a Flare not a Flare ????
GCA flare, or not?
Flare or Something Else?
PMR flare or not.
