Beginning of September last year it was coming up to my third anniversary of PMR. I was down to 1mg pred😊. My GP wanted me to stay on 1mg for 3 months. All was fine. That was about the last time I posted. Then medication review in early December.and suggestion (say prod) from GP to work down to zero. Over the next 7 weeks I was well down and doing fine. No probs. Then last week I could feel one side of hip then the other followed until I was sitting down early morning and a complete girdle of discomfort. Took 5mg and it subsided within a couple of hours. That was Monday. All been OK since. Thinking of taking 5mg today then back to 1mg tomorrow. As per our deal I called surgery to updated GP. But got a call back from a different doc who wanted a blood test which I had that day, still talking Monday. He also said that guidelines say that after this length of time I need to see a rheumy, that's what the guidelines say! I'm well managed on 1 mg do I really need to see a rheumy?
We are moving house and it has been a tad complicated = the dreaded stress. So not surprised I was flaring a tad.
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MamaBeagle
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Good morning MamaBeagle, will be following this with interest though no advice - in similar boat - nearly 6 years on Pred for PMR and on1mg or occasionally 2mg pretty happily for years. Last month or so not so good- just taken 5mg for last few days with great results but only got 1mg tablets and running a bit low but note on prescription to review before next repeat -never had a review before and stay away from drs as much as possible. I just want some more tablets and not a rheumatologist either! Hoping to get some information before I ring the surgery next week. I know the mean time on prednisolone is just under six years -think I’ve kept the link to the document but wondering if would alienate GP if quoted it? Thanks for posting 😊
Exactly how I feel. Could you send me the link about the 6 years and pred. Don't know why he's getting his knickers in a twist. 1 mg is such a low dose. They just want you off it and b---er the symptoms. I've not dealt with this doc before but beginning to think he's a jobsworth!
That’s one but I’m never sure if my links work. It was from one of PMRpro’s excellent posts
Ps also Professor Dasgupta recommends keeping some patients on long term low dose (2mg/3mg daily) prednisolone to prevent recurrence-but I can’t find a link for that but I’m sure others will x
Funny how guidelines get twisted to what suits them!! I would be surprised if they'd bother seeing a patient who has reached 1mg - especially in the current situation.
If you are managing well on 1mg after 3 years - why on earth mess about with it - what you have experienced is not uncommon, that's about the right time to allow the inflammation to build up to a level you can feel. A few months ago Prof Dasgupta told us in a webinar that he keeps a lot of patients on 2-3mg indefinitely as it reduces the incidence of flares - you're doing better than him!
Thanks Pro. As we're moving if he does want to refer to rheumy I'll tell him I'll sort it out with new GP. I've got enough steroids to last me for ages so if I can still be well on 1 mg I won't be in a rush to see them, especially not before I can sus out the lie of the land😏. In the meantime I'll bone up on all the info you sent me so I'm well prepared for any call.He's the doc who didn't make a very good job of my flu jab in 2019. But then they don't get to practise much these days. And I do remember he tried to give me a shingles jab. He didn't have a clue it was not recommended for PMR. Was a bit miffed when I refused his offer.
Yes I did, she really was a waste of time. She did take lots of xrays though and took dozens of blood tests. Three months later my surgery still could not check the results as she had not looked at them. The next visit I saw her assistant who said my hip was in a bad way, the rheumatologist had not looked at the xrays either. The assistant was brilliant and got me a hip replacement.
Interesting. I was initially diagnosed by gp and referral to rheumy who confirmed pmr. Handed back to GP. 2 Gp's and 6 yrs later was rereferred to rheumy by GP. A pleasant day out - the first time I had experienced a sensibly run hospital and efficient xray dept etc. Relatively pointless though. Was told I had mechanical issues in my good shoulder - nothing in the one that gives a lot of pain and that may be in remission from pmr despite symptoms of flare. I just quietly ignored all that and new GP tuned in and agreed without saying so!
It's all a voyage of discovery with a lot of uncharted waters!!!
It sure is! I was diagnosed when I was living in France and went to see a rheumy there. He just confirmed GP diagnosis which was never in doubt....but both said it would only last a year or too!!!!
It is interesting - my rheumy said he had a lot of patients with a long version of PMR but unlike me they are on a low dose of pred. Rarely gets a mention though.
Because I've been symptom free during PMR it kind of lulls me into what turns out to be a false sense of security! It's only 1 mg, no pains and over 3 years....perhaps it's gone now. Only to find out it hasn't.
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A bit about cortisol levels etc
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Bit of Advice 
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Any hints to make life a bit more manageable?
