I’m new here. PMR since September 2020.

[Cact]

Came across this site by chance & so glad I did. Was diagnosed with PMR last September after 2 months of debilitating pain. Started on 20mg of prednisolone & couldn’t believe how quickly they worked, I was pain free within a matter of hours. However, having been diagnosed with diabetes T2 in April last year, my blood glucose was increasing to double figures because of the steroids, so I was put on 15mg. These were reduced by 2.5mg over the following months until I got to 5mg around March, then 4mg in April. But I began to notice that my legs started to drag a bit while going up the stairs & felt heavy, sometimes with a dull ache, but it didn’t last long.

I mentioned this when my preds were due to be reduced to 3mg, my GP suggested I stay on the 4mg for another month. Now however that dull ache turned into pain on Tuesday, from my left hip, buttock & thigh every time I try to sit, stand up or bend over. Rang my medical centre on Wednesday to book a GP callback, only to be told June 7th was the earliest available booking, even though I told her it was urgent. It’s now Saturday & no call, so I decided to increase my dose by 1mg. The pain comes & goes but not as bad as it was. It’s definitely improved though.

This site has been so helpful for me, I’d never even heard of PMR before I was diagnosed, & I don’t know anyone with the condition to compare notes with, so I’ve learned a lot about it in the short time I’ve been here. You’re all brilliant, thank you so much for all your great advice & suggestions.

[PMRpro Ambassador]

Welcome!To get to 5mg in 6 months is brilliant - it takes up to 18 months for even half of patients to get down to 5mg.

What you are describing sounds like greater trochanteric pain syndrome - which has always been called trochanteric bursitis in the past so you will get more results if you google that but there are lots of very good articles about it and suggestions for things you can try to ease the pain in the meantime.

my.clevelandclinic.org/heal....

physio-pedia.com/Trochanter...

It is quite common as part of PMR - and while you will see in the articles that overuse etc causes it, so does the recurring inflammation of PMR. That makes it a bit harder to sort out really - just rest doesn't always do the job. I have had local steroid injections from my rheumy and they make a BIG difference.

Really wouldn't do to be really ill and need a GP would it? I'm really beginning to think they should be moved into the A&E departments so they can deal with the patients who end up there because they can't see their GP!

[Cact in reply to PMRpro]

Thank you so much for your quick reply. I’ll check out those links you attached soon. I assumed I was having a flare up & the increase in prednisolone would hopefully sort it out. It has helped a little with the pain as sometimes I can stand up or sit down pain free, but it’s more painful than not.You mentioned “overuse”. I walk to my daughters nearly every day, it’s about a 15min walk so 30mins altogether. Every other day I walk to the shops, another 15 mins, so wondering if I’m overdoing it a bit?. Plus the fact we live over a Finance House, we have 2 floors & 39 steps from the front door up. Plenty of exercise is recommended but maybe I’ll cut down a bit. I don’t need to lose any weight, I was 49k when diagnosed with Type2 & now I can’t seen to get any higher than 40.5 (about 6.5 stone I think).

Thanks again for your help & advice, it’s much appreciated. I’m off now to check out those links you posted 👍.

[PMRpro Ambassador in reply to Cact]

"Plenty of exercise is recommended but maybe I’ll cut down a bit."

By whom? At a guess someone who has never had PMR! Exercise is good - don't get me wrong - but only what you can manage to do and certain things are better than others. I can walk for about 45mins a day - enough to get me to the other end of the village to the pharmacy and back through the middle and the shops. If I do more than that I start to feel the outer hip pain. When I get back, I can choose whether I do the 30+ steps to the second floor - or take the lift.

Before I was diagnosed I had had PMR for 5 years and about 6 months before I saw a rheumy I had had a major flare of symptoms and another problem that lead the local stroke lead to decide I shouldn't drive although it was definitely not a stroke (she hadn't listened to MY version of the episode, and obviously thought an A&E consultant couldn't diagnose! And she was wrong, DVLA said so). I was stuck in the house we had just moved to temporarily where the kitchen was on the ground floor, the bathroom upstairs, so whether I worked up or downstairs, stairs were a frequent requirement. Our previous house had had 3 loos! Within a short time the pain was indescribable and I could do nothing - I couldn't walk to the bus if I could have got on it, the town was all hills anyway.

I managed to get here to our flat - all on one level and a LIFT! How I managed the bus to London and then to Gatwick I have no idea, Innsbruck to here was equally awful with a bus and two changes of train but I did it and slept for 3 days. I managed to transfer my skis and boots to the store facility at the bottom of the mountain. With no stairs (and skis) to manage I was able to walk to the ski bus - and I was able to ski short distances for a couple of hours each day. The action sorted the stiffness and by the time I came home at lunchtime I could almost walk normally.

That is the difference stairs can make when you have trochanteric bursitis! You are doing a lot of steps - it isn't going to be possible to do less of them, but maybe a bit less walking will help.

[Cact in reply to PMRpro]

Omg, I can’t imagine what you went through for the 5 years you had PMR before being diagnosed. I only had the pains for 2 months & I wanted to die, seriously. I struggled with everything, getting dressed, 20 mins or more to get out of bed, dragging myself up the stairs with both feet on each step, afraid to go out by myself in case someone brushed against me & I’d fall down unable to get up, even picking up the kettle was difficult. I felt I didn’t want to go on living like this for the rest of my life. Then one evening at 7pm, my GP rang & said the magic words that changed my life. He said “we need to bring you in”. I laughed because it sounded like something the police would say, but soon realised he was serious & obviously concerned about my condition. When he asked the usual questions about any symptoms I had, I told him I had flulike ones as I’d had the flu jab 2 days earlier, so he rang the Royal Free & I was in there the next morning at 9am. Started on Prednisolone September 16th & have been pain free since then, until a few days ago that is.

It sounds like you’ve been through hell & back & I’m so sorry to hear that. Hope you’re in a better place now 👍

[PMRpro Ambassador in reply to Cact]

I still have PMR but with pred it is the least of my problems

[Hidden]

Hi CactI have nothing useful to add but wanted to say Welcome.

[Cact in reply to Hidden]

Thank you NorfolkEnchants

[Pondweed]

I too wanted to welcome you Cact 👍👍👏👏 I am a PMR Newbie (diagnosed 5 weeks ago). Prednisolone and this excellent forum have formed the backbone of my recovery and understanding of a condition I had never heard of two months ago!!Bring on a brighter pain free future ☀️☀️☀️

[Cact in reply to Pondweed]

Amen to that Pondweed, 👍

[Grannyasbo]

Another new member of the PMR club here. Just saying welcome. And also that this forum is a life saver.

[Cact in reply to Grannyasbo]

Thank you Grannyasbo, it’s a brilliant forum, so much information & advice from fellow sufferers 👍