Firstly thank you all for all your wonderful help. This would have been even more difficult without you.
I was diagnosed with PMR March '22, aged 64, via a phone call with a trainee GP. Started on Prednisolone & told to taper every 3 weeks by my own GP, again by a phone call. She stated my PMR would last one year. This didn't go well. Another GP phone call said that any problems with tappering is down to the nature of PMR.
To date I have never seen a GP f2f & only 3 calls '22. So 2023 I self referred to a local rheumatologist. To date I've seen she f2f twice & 2 phone calls.
Having seen her f2f today she told me that my PMR has probably gone as I'm at such a low dose, 2.5mg. Also I am more likely not to have an active disease but have steroid dependence & need to come off steroids due to the side effects.
This was a surprise given that I still have some difficulty with stairs, getting out of the bath /car and some shoulder pain. This apparently is due to my bilateral hip & shoulder bursitis & not PMR. I don't agree. Also I no longer need to take calcium despite having osteopenia but must continue vit D. Again a surprise.
She wanted me to start Methorexate, I declined. Not sure this would be wise or useful at 2.5mg. Therefore she told me to reduce by one day a week to 2mg, 2.5mg rest of the week. For 3 to 4 weeks. Then 2mg twice a week for 3 to 4weeks etc. She would speak to me in 6 months.
Following the consulatation I had full BT including ESR & CRP. I am to have ultrasound on my hips & shoulders.
Is it really possible my PMR may have gone & that I'm steroid dependent? I really don't know that to think.
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Portrush1957
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she told me that my PMR has probably gone as I'm at such a low dose, 2.5mg.
I’m afraid it doesn’t work like that… she might think it does… but not sure your PMR would agree. Sounds as if she needs to do a bit research on PMR,..
I doubt very much your PMR is gone… it might have, but you won’t know until you get to zero and are Pred free for a few months..but I am concerned at the taper you have been given to get there.
It maybe too fast for PMR [if you still have it] and also your adrenals…but you won’t know until you try I guess. But do keep notes on how it goes - and if you’re not happy then seek advice.
Yes, but it won’t help your adrenal function come back if it is still a bit suppressed. Only slow tapering with help that. If you are in remission then Methotrexate isn’t necessary; she needs to make up her mind.
What do you mean by steroid dependent? How does that show itself?
I suppose you could say I am coffee dependant as I drink coffee all the time! I really despair at the comments made by some so called professionals. How does she know the PMR has gone? Perhaps you could ask her 🤪🤪🤪
This was a surprise given that I still have some difficulty with stairs, getting out of the bath /car and some shoulder pain. This apparently is due to my bilateral hip & shoulder bursitis & not PMR. I don't agree.
Hi Portrush1959
Firstly, my sympathy, as you obviously feel a bit 'messed about', something that seems common with PMR sufferers. I read your post before i saw my physio today and he tells me that bursitis problems can be treated by physiotherapy. It might be worth getting examined by one.
Therefore she told me to reduce by one day a week to 2mg, 2.5mg rest of the week. For 3 to 4 weeks. Then 2mg twice a week for 3 to 4weeks etc. She would speak to me in 6 months.
I tried this type of reduction (and a few more) last year and they didn't really work that well. Following a visit to a consultant and taking advice from this site I got a pill cutter and reduce by 0.5 mg a month. It seems to be working although I do have the odd bad day.
If something doesn't work then don't keep trying the same thing over and over as i did. There seem to be a whole variety of reduction plans to try. We are all different and what suits one may not suit the next person.
Thank you. Yes like so many I don't think I've been very well served when it comes to PMR. I'll try her tapering but if it's not workilng then I'll have to rethink somehow.
Hopefully the ultrasound findings will point me in the right direction re treatment for the bursitis. I've had steroid injections in my hips before but they didn't last long term as they don't & only one area at a time allowed. Could be a slow process!
Hello, I'm no expert but this sounds a bit dodgy to me. Some of the gps at our practice also seem not very experienced with PMR. I get conflicting advice. I started following the advice on the forum and send my GP updates from time to time. They seem happy enough with that so far
I am surprised about no face to face with GP, I've had 4 f2f appointments about pmr over the last year since diagnosis. NHS too, this seems very different in different practices. At the first appointment she did some physical tests to see where I had pain and rule out Parkinsons (my worry as my grandfather had it and the freezing unable to move bit reminded me), and at the second after a week on pred, she said wow the way you walked in is so different! I guess you can do these things on a video call? I know this is not the main point!
Yes 3 years plus of PMR & never a f2f with a GP. Not even at the start. However they keep supplying me with steroids without a drug review.Still written up for 5mg tablets not taken since early 2022.
one i did book myself online, headed it 6 month checkup for polymyalgia rheumatica, I find urgent f2f appointments can be harder to get but appointments in a couple of weeks are fine. And I thought saying what for would help them prepare a bit
"Having seen her f2f today she told me that my PMR has probably gone as I'm at such a low dose, 2.5mg. Also I am more likely not to have an active disease but have steroid dependence & need to come off steroids due to the side effects."
Wrong, wrong, wrong - if she is taking a particular interest in PMR - she is practising under false pretences!!!! None of that makes ANY sense at all - if you don't have PMR any more, you wouldn't need MTX so why introduce it? It isn't going to encourage adrenal function to return - and that is the real meaning of steroid dependency so her endocrinology is a bit skewed too.
DL and I would love a crystal ball too but we haven't found one that works yet - so don't know where she got hers from.
Yes, none of it made any sense to me too. So glad to have all of your help & wise words. Without you I may have belived her. Thank you. Definitely not taking MTX. The whole consulatation was very disappointing.
Hello, I've had PMR since Oct 2009, when I'd just turned 59, and been on Pred since July 2010. I started on 15mg per day, and over the years reduced down to 4mg, where I was able to function as a normal human being most of the time. Although I was aware that if I did anything too strenuous then I'd suffer for the next 2 - 3 days with exhaustion and muscle pain.
I saw a rheumy 2 years ago, for the first time since being diagnosed 13 years before. The first thing she said to me as I went into her office was, "You don't have PMR anymore!"
My instant reply was, "Have you told my PMR that?"
She then went on about me being 'steroid dependent', which I thought was a bit of a cop out, as she's got no idea what my life is like.
Anyway, I listened, but didn't agree with her, and I let her know I didn't agree with her about either the PMR, or being 'steroid dependent'.
She then wrote a letter to my GP, in which she said that I'd probably be on Pred for life. I thought that was quite kind of her, given our rather unfriendly meeting, but I did try reducing from 4mg to 3mg, and even went on to try to get down to 2mg. However, at 2mg I was unable to get up in the morning due to neck and shoulder pain, so I went back up to 4mg initially, then back to 3mg when the shoulder pain had calmed down.
I then stayed at 3mg for a year, during which time I gradually became less and less able to do things. The normal things we do, like shopping, cleaning, cooking, etc. It got so bad that I couldn't even leave the house anymore, so last August I put myself back up to 4mg, and am now relatively steady on that dose.
I put the gradual loss of ability down to adrenal insufficiency. It crept up on me slowly, so I didn't notice it at first, and indeed it took a long time for me to recognise that it was happening, and even after going back up to 4mg, it's taken a good 5 months for the adrenals to catch up, but now I feel almost like I did before I ever reduced from 4mg downwards.
So now I'm at 4mg and staying there for the near future at least. I may attempt to reduce my Pred if I ever feel that I'm completely over the pain and stiffness, but that's not my current feeling, so I'm staying where I feel comfortable in my own skin.
If you have to see a rheumy again, just remember you can stop them in their tracks if they try to brow beat you with the old, "You don't have PMR!" trick. Just reply, "Have you told my PMR that?" It worked for me, and hopefully for you as well.
Thank you sharing your experience. You've been through a tough time. So I'm not alone with this nonsense about my PMR having gone.I'll be seeing her again in 6 months ( not sure what good that will do) but I'll be much better armed with " have you told my PMR that."
hi portrush. How can they possibly “know” your PMR has gone & you’re steroid dependent. It’s crazy. The fact is, you sound like me and doing a very slow taper. (I’m currently on 2mg: was diagnosed over the phone march 2020 & never had a f2f since!)
I haven’t really suffered too much tbh & my CRP etc are normal range, but I know from how my body aches my PMR is still keeping me company! Unless it’s “old age” at nearly 73!
These so called “professionals” need to study the subject somewhat more.
Exactly, I definitely know that I still have PMR. I explained my body aches but she insisted the various pains are due to my various bursitis. The pain of bursitis is different to PMR muscle pain & in different places. What happened to listening to your patient! I'm living this, she isn't.
My husband is of the opinion that GPs know 'a little bit about a lot' so he made me an appointment with his rheumatologist at the end of last year, thinking she would know more about her speciality. She charged me over £200 to tell me I had a shoulder impingement!I've done better to lean on the advice in this forum so far. It is very good.
I would agree with you husband but also it's bad that some give the wrong advice & don't know the basics of PMR. Nobody in my practice seems to understand PMR or are particularly interested in it.I'm so grateful for this forum. Life would be much harder without it.
What surprises me is the variability, Im happy with my GPs so far, the only real concern has been lack of continuity, someone different nearly every time. But it seems some people get calcium, some dont, some get dexa scan, some get PPI and some get immediate AA for bones, yet there is a clear and pretty reasonable suggested guideline they could check .... and I dont think its always responding to details of the case, just a bit random which bits they do.
It's almost like you are telling my story. I too am at 2.5mg after 4 failed taper attempts since 2021. I am at my wits end with this and finally saw an Endocrinologist yesterday to help me get off steroids (assuming PMR is gone). Starting today I will be switching over to hydrocortisone, and then revisit with Endo again in 3 months to determine if a reduction is in order after reviewing pre and post adrenal function lab work. This is the first time any doctor has spoken seriously to me about avoiding adrenal crisis so this is enlightening. I don't know if this will work but it's worth a try. Repeating the same pattern is not working.
Portrush, I noticed that you asked what reducing plan you should follow if not the suggested that we have all rejected, but no one answered you. There is a whole roomful of possible plans here in the FAQs if you look there! Good luck! I looked and copied the link for you. healthunlocked.com/pmrgcauk...
Portrush, I noticed that you asked what reducing plan you should follow if not the suggested that we have all rejected, but no one answered you.
Not sure that’s strictly true - I did say I thought it was a bit quick, but the only way to know was to try it and see… and if it didn’t work, to seek more advice.
surely they have to test your inflammation markers first before making these decisions? Sounds like you’ve had some dreadful care. I’ve only just discovered this site but you probably have more knowledge than they do! Don’t make any decisions until you’ve been tested for CRP and ESR levels 😊
Portrush was tested as stated in post -albeit not sure is they had results-
Following the consulatation I had full BT including ESR & CRP. I am to have ultrasound on my hips & shoulders.
Just for your info as you are new to site, many patients don’t have raised markers at diagnosis nor through the whole time they are on Pred . Plus they aren’t specific to PMR/GCA - so they aren’t the answer to everything.
Gosh I didn’t know that raised markers aren’t a feature for all. I’ve navigated my decisions to increase and decrease by reference to the test results. What a horribly difficult situation Portrush - I hope it goes well for you ☀️
In fact up to twenty per cent of people never havecraised markers for some unknown reason. I am the opposite, my markers sometimes shoot up over 100 and they are always very high. Initially doctors panicked and I was tested for everything including cancer. They have now decided it is just me, which seems to be the final diagnosis.
That must have been scary for you. Mine got as far as 113 but did come down when they eventually gave me steroids. Pain was awful for so long and the uncertainty is so tough to deal with isn’t it. Good luck with it all.
Where they are relevant, yes it is useful. But I have never had markers outide normal range though they were raised for me. It delayed my diagnosis for 5 years.
Five years sounds just dreadful. How frustrating and painful for you. I can only imagine. I hope things are getting better for you. Keeps me in perspective- they took three months to diagnose and give me anything that addressed it even to a degree. By that stage I was wondering how much longer I could survive. No idea how you coped for five years. Just amazing really.
Getting better in that I have a superb rheumy and I live in Italy where I get tocilizumab for PMR which has reduced the pred from 19mg to 7mg. But still have it after 20 years,
I assume by your handle that it’s Portrush Co Antrim. I’m a little worried as I’m currently on a waiting list to see a Rheumatologist & I suspect it will be the same one from Northern Trust.
I’ve a friend who was diagnosed initially with PMR & then they changed their mind after he had to be wheeled into hospital in a wheelchair.
He’s now on Methotrexate & they’re installing him it’s probably rhematroid arthritis he has. He’s able to hold down a part time job which involves lifting a lot of boxes which is good for him.
It seems there’s a lot of guesswork & trial & error with doctors round these illnesses
Shameful that you’ve never actually been seen by a GP face to face. Thankfully our surgery in Broughshane is the opposite of 2 days is longest I’ve ever waited for a face to face appointment.
Similar - 5.5 yers diagnosed with PMR, and this past month the new rheumatologist at London's Chelsea and Westminster Hospital told me I no longer have PMR (if I ever did) and that the steroids have cause me severe osteoporosis and I must get off quickly. I am so shocked!
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Has PMR gone?
where can I read info regarding blood tests for levels o CRP?
Rheumatology appointment update
My PMR has apparently "morphed" 
