1. < Polymyalgia Rheumatica (PMR)

Go away flare

Posted by tiateacake @tiateacake, 4 days ago

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

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rnm | @rnm | 3 days ago

Hello,
I'm wondering how long you have been on prednisone, what was your initial dosage and how is your doctor tapering you. I agree with you about the activity level. When I first get up, I am still very achy, but if I am able to exercise a bit, I feel better. Also, I have been taking an Advil in the morning with the prednisone, which sometimes helps. Thank you.

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tiateacake | @tiateacake | 3 days ago

The symptoms started in April last year but I did not seek help until May so I was pretty bad by then. I saw a nurse for blood tests and started on 15mg. I was given a tapering list and basically told off you go. I did get a problem when the list said 12.5 and then drop to 10mg which I now know was too big a taper, I had to stay on 12 then taper by 1mg every 6 weeks. Thankfully I found this helpful site and have been able to learn more. Once back at the gym it took months before I could increase any weights used esp on shoulders. Swimming really helped and still does. I was able to get back to normal with my fitness and I realised tapering every 6 weeks was not right for me, possibly because I was so active so dropped it to 4 weeks and felt better for it. No problems as such until 5mg but they were not really problems just my body realising it had to do some of the work Pred was doing. Last day of 4mg today and going to do 3.5 for a week then drop it to 3mg all being well. Routine really seems to help me but that was fine until family came to stay for a few days and just changing the time I had dinner had a massive effect on me, for the two nights they were here I only had a couple of hours sleep and the pain was back and appetite disappeared so I knew PMR was reminding me it could come back, I did struggle a little in the gym yesterday but I feel better this morning and a good 8 hours sleep has really helped. I don’t normally take supplements apart from the much needed calcium one but I started taking a vit B complex and my sleep improved after about a month. If the problems that seemed to be returning had remained then of course I would have stayed on 4mg for another week but I think all is well. Not sure if my long post will be of any help to you. If you love your fitness then you will be used to listening to your body and that will really help you. Take care.

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1 reply
agfuen05 | @agfuen05 | 2 days ago

Good luck tapering off Pred. I have been trying to get off of it for a while but even the little things done wrong seem to bring back the pain, soreness and stiffness to my joints and muscles. I'm currently alternating 3-4 mg every other day. My target is to be off Pred by June. Again, good luck.

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charm1 | @charm1 | 2 days ago

I commend for your going down/off prednisone. I am going on 30 yrs and will never be off. For your health in later years do continue on your path.

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vgen | @vgen | 2 days ago
In reply to @tiateacake "The symptoms started in April last year but I did not seek help until May so..." + (show)
@tiateacake

The symptoms started in April last year but I did not seek help until May so I was pretty bad by then. I saw a nurse for blood tests and started on 15mg. I was given a tapering list and basically told off you go. I did get a problem when the list said 12.5 and then drop to 10mg which I now know was too big a taper, I had to stay on 12 then taper by 1mg every 6 weeks. Thankfully I found this helpful site and have been able to learn more. Once back at the gym it took months before I could increase any weights used esp on shoulders. Swimming really helped and still does. I was able to get back to normal with my fitness and I realised tapering every 6 weeks was not right for me, possibly because I was so active so dropped it to 4 weeks and felt better for it. No problems as such until 5mg but they were not really problems just my body realising it had to do some of the work Pred was doing. Last day of 4mg today and going to do 3.5 for a week then drop it to 3mg all being well. Routine really seems to help me but that was fine until family came to stay for a few days and just changing the time I had dinner had a massive effect on me, for the two nights they were here I only had a couple of hours sleep and the pain was back and appetite disappeared so I knew PMR was reminding me it could come back, I did struggle a little in the gym yesterday but I feel better this morning and a good 8 hours sleep has really helped. I don’t normally take supplements apart from the much needed calcium one but I started taking a vit B complex and my sleep improved after about a month. If the problems that seemed to be returning had remained then of course I would have stayed on 4mg for another week but I think all is well. Not sure if my long post will be of any help to you. If you love your fitness then you will be used to listening to your body and that will really help you. Take care.

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Your journey sounds familiar. Many of us were older women who were active and exercised then knocked down with PMR. Never heard of it before i was diagnosed. And didn’t realize how it can take me down.

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