Female aged 77. I was diagnosed PMR. Sept. 22. I have never seen my GP he only spoke to me by phone following a blood test. He told me I had PMR. Then posted me. a paper giving details of tapering. I received another letter telling me about the steroid emergency card. I knew nothing about this. GP hadn’t mentioned one. I decided to educate myself , and found you lovely Informed people.
I am now on 2mg Prednisolone per day. Whenever I have tapered (monthly) I get sticky aching legs. A little in my arms. It gets better as the day progresses. However, the pain remains the same each time I taper and after about a Week gets a little better. It is quite bearable although I do sometimes limp and am slow on stairs. Wobbly on uneven ground (dog walks)
Am I correct in thinking that I still have PMR due to the aches? So I have decided to drop by halves for the next four months (from 2 - 0) . My question is do I need a blood test and what levels should I be at to enable me to taper further. Most important is what do I request of my GP? I haven’t spoken to him at all since first diagnosed. He has never mentioned a blood test.
I know I am fortunate to have got this far, so any information will be very much appreciated.
Fetlar 72.
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Fetlar73
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I have to say I find it strange that you have been diagnosed in this way. My GP took over 3 months to rule things out, I had an MRI, numerous blood and urine tests before diagnosis. If you have managed to get your dose of prednisolone down to 2mg so quickly you are amazing as PMR usually lasts at least 2 years and often a lot longer.
ESR is often normal to you. Mine at my last blood test was 24 which my doctor thought was normal but my nurse said she didn’t think it was as looking back to after I was put on prednisolone my ESR was 9 so 24 was high for me. My nurse was right!
I am sure the experts will be on soon to reply to you.
thanks Koalajane , it has been very difficult to actually see a GP in my area since Covid. I phoned him told hi. Symptoms and he suggested a blood test. Then he phoned me to say I had PMR. I was sceptical so I arranged to see a rheumatologist privately. He questioned me and then he said he was here I has PMR although I didn’t have by tests, except to ask me to tie my arms. But as he agreed with my GP, I believed them and had more confidence in taking medication etc., you appear to have had extensive tests, and very good care. Are you living in the U.K.? Thanks you for your information I really appreciate it. I meant to say I was dish nosed in 2021 September. My mistake.
that does make a bit more sense. I decided that I will only ask for blood tests for inflammation if I was really hurting as I believe symptoms are more important.
gosh I think my emails are jumping all over the place once I press send. They make sense when I read them back before sending.still I did laugh, no my Rheumatologist did NOT tie my arms!! He asked me to lift them above my head! I agree with you I can live with this level of pain. I am amazed you live in the U.K. congratulations you have a rheumatologist and a nurse. Don’t ever move away from wherever you are. Thanks for your reply.
no rheumatologist just a GP and the nurse is my very knowledgeable wonderful diabetic nurse. My type 2 diabetes is in remission but I still get my annual review with her. I was diagnosed type 2 about 4 months after my PMR diagnosis and she has been a gem.
As you joined last year, guess you mean you were not diagnosed in September 2022 -but 2021?
As you’ve managed so far without blood tests, just go by symptoms, or lack of them to continue to decrease - that’s a much better guide. But you have got low in a short time, whether that’s one year or two, so your PMR is probably still active, so just watch it doesn’t cause any issues as you continue to reduce.,
You can request ESR and CRP to be tested, but unless you are having issues and a return of symptoms, don’t see the need.
That is absolutely appalling - no examination to differentiate between PMR and anything else and no blood tests! PMR isn't the disease, it is the name given to a set of symptoms which can have a range of underlying causes - including cancer! It should be a diagnosis of exclusion - you have to exclude everything else it might be, and THEN you can conclude it is likely to be PMR.
What do you want to know about ESR/CRP? Like others - my personal ESR is low single figures and never rose above the "normal range" even during a horrendous flare. My CRP was never raised. They aren't really very meaningful unless they have been checked at intervals.
Yes I I’d. N Sept. 2021 irt ignore. Sorry. well from what you say everyone appears to have different outcomes with the blood tests. I know that Reacive protein levels can be found in tbe blood. But have no further idea of what the blood test actually tells one. Hovever as you say the results are not very meaningful if I haven’t had tests before. Which I haven’t. I have also noticed in the past two days that I m not as tired as I usually am. I shall taper very carefully, get lot of rest, and see what happens. Thanks for your reply, much appreciated.
ESR (erythrocyte sedimentation rate) and CRP (c-reactive protein) are both markers of the presence of inflammation in the body - but very unspecific, just there is inflammation or infection but not where. A chesty cold can send the CRP up, pneumonia will send it into silly figures! ESR will rise with any old cold. Or a urinary tract infection - or severe bruising or a twisted ankle.
You need context for them to be meaningful and a single raised level shouldn't result in a kneejerk increase in the pred dose unless you have symptoms that fit. Then the correct procedure is to check a week or so later to look for a rising trend.
lots to think about and to research. It seems pointless at this time to have a single blood test. I appear to be tapering ok , just getting a wee bit nervous as I hope I come to the end. Once again I thank you for all the knowledge you share with others.
hi Fetlar73. Your story resonates with me to a ‘T’!
I was diagnosed with PMR over the phone in March 2020, following blood tests because I had developed pain in my legs. The GP emailed me a leaflet about PMR and said I could be on steroids for at least a couple of years.
I will say that she did phone me regularly to see how I was doing and each time told me to taper down when necessary.
I was never referred to a rheumy, nor was I offered a blue card. It was only after reading about it on this fantastic site that I marched along to the surgery and asked for one.
We moved house (and surgery) a year ago and my new GP doesn’t say anything. I just do my own thing!
initially I was on 15mg in 2020 and I’ve tried tapering down a couple of times: I’m presently on 5mg but am just being cautious about going any further due to the pain in my shoulders.
Sorry for this long ramble, but your situation sounds so much like mine.
Just don’t rush into any taper. Just do it very gradually. I do it 0.mg each time I want to drop down. Good luck with it all.
Good Morning Doraflora, no your message wasn’t rambling it is good to know that others follow the same pattern. I was diagnosed 2021. I began tapering 1 mg every six weeks. Then once a month. If the pain had got worse I would have taken it slower. However all has been well, level of stiffness bearable. I am now reducing by half a tablet per month. I shall let this website know if I succeed. Although I am aware this is not a race. Dorset lady emailed me some good advice about tapering. Thank you for your information fellow traveller, I wish you every success in your journey.
How strange you haven’t spoken to a GP f2f. I am amazed at how well you are doing with so little support. This forum is the best support anyone could ask for.
Good luck and I hope you get some more support besides all the help you will get on here 😊
Thank you for your reply. I guess there must be people who do come off steroids more easily than others. Yes I have learnt so much from this site . It is one huge support group . I am very fortunate that I have a husband who does so much for me when I am feeling so tired. Thank you again for your kind wishes.
Bloodwork is of the utmost importance. I have GCA and bloodwork done every 2 weeks. I don’t understand why your doctor does not do follow ups with respect to your tapering.
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