After a telephone consultation with my rheumatologist. I told her that I had managed to get to 1mg but just of late I’ve gone back to 3mg and still shoulders and back of legs aching especially in the morning
She said it wasn’t PMR as it only last two years and I’ve had it for over 4years. She said I should be off steroids in two months . The pain I was experiencing was general wear and tear..
It makes me angry that these people sit at home doing phone consultations never seeing patients. I needed to order more steroids 1mg and 5mg but the doctor wouldn’t give a prescription guess he had read the letter from the rheumatologist. Couldn’t see the doctor either but he relented eventually.giving me a prescription.Took two days at 10mg on 5mg now for a few days then try to work down again. Pain free at the moment
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Flrchrs
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Sounds like that’s a blessing, however she did you wrong by writing such a letter (which obviously shows her limited knowledge and lack of patient care). Best to seek out a new rheumy, or be overseen by your GP. Someone needs to keep filling you’re prescription as long as you still require pred (which you certainly can’t just abruptly stop....surely all physicians know the danger of that!). Advocate for your help and don’t let anyone rush you down to “0” again. Listen to your body and adjust your dose accordingly.
Part of me would be pleased to direct her to this site with such a large “sample size” of PMR patients who have had it well over 2 years (sigh).
I'm in to my sixth year with PMR, and currently on 1mg per day. Have tried twice to get lower, but my body says "no".Suggest your rheumy needs a rethink!
I have heard that it doesn't really matter if you have to stay on a low dose for the rest of your life if it deals with the residual PMR. At 1 mg I wouldn't be worrying too much! LOVE this forum!!!
Once I got a diagnosis, which took a long time, I've been so lucky with my doctors. My GP for four years, a locum and a new doctor have all been supportive. One mistake, when first GP suggested (I'd just tapered to 1.5) I use up my tablets and stop and see what happened was a disaster, but otherwise I've received nothing but support. I dread to think what my life would have been like the last few years if I'd had to contend with an ignorant and closed minded doctor.
PMR developed literally overnight well over 3 years ago. GP said I would "probably find it would disappear just as quickly in 2 years". I'm still waiting!!!
I've been on pred for nearly nine years (4 mg ATM) and my doctor told me I'd probably be on it for life.
On this forum you often read rhemies giving same 'old' advice. They are wrong! The British Medical Journal and the Mayo Clinic have excellent advice and even they say PMR has a medien life of 5.9 years.
I have had pmr for over 12months and have finally got to 1mg this us my second bout I had it 6 years ago as well and was told there is no time limit by my rheumatologist. Phone consultations are useless they never seem to have enough time for you to discuss how it’s affecting you so I just monitor it myself now don’t bother with dr until I can go back face to face
Aww my goodness, that’s so bad , I would drop that rheumatologist lot a hot brick! There are plenty of us who have suffered PMR for much longer. I was diagnosed in 2016 , I’m down to 2 1/2mg heading to 2 mg But I was on this dose Two years ago. It takes as long as it takes.
Luckily my GP leaves me to it and I check in every now and again.
Listen to your body and go with it. I’ve learned so much on this site.
That’s what the literature says: two years. So they believe what pontificating, pompous prophets of.......teach. There’s a warning that medical students should heed: One half of what you learn in medical school is wrong; the problem is, you don’t know which half. Listening to patients can be a real education.
I was diagnosed with PMR in 2016 and then GCA-LVV in 2019. I saw my Rheumatologist this week and she positively encouraged me to stay on 5mg pred until the summer!!
Where are you (in the UK?). I'm sure someone will recommend a sympathetic rheumy for you.
That is awful. Glad you are feeling better again. But stress makes this worse and that’s what the medics give us ‘Stress’. Telephone consultations are useless and wrong. How can any diagnosis be made over a telephone.
I just read a post on the lupus forum from someone with Tin Man syndrome, a very rare neurological syndrome. She had suspected it and did her homework before seeking out apparent experts in the field. I mention "apparent" because the doctor she saw and who did the tests had written a chapter in a textbook - but had never seen an actual case in his career! You couldn't make it up could you?
It appears from at least 3 publications now that it is emerging even amongst the rheumatology world that only about 20% of cases of PMR fulfil this 2 year and less criterion. By 5-6 years half of patients are off pred - so about another third need more than 2 years but do get off pred. The rest of us take longer - and where it has been looked at for longer, it was found that 40% of us still need a low dose at 10 years.
are links to articles about the same study with the figures I quoted. A more recent German paper (I can't find the link, I thought I had saved it) has found similar figures for the shorter times. My own rheumatologist, a world name in the field, says he has a lot of patients on long term pred, I am unusual as most require only a low dose but they do need it.
Last summer Prof Dasgupta told us he often keeps patients at 2-3mg indefinitely because it reduces the risk of relapse. And that seems to me to be an acknowledgement that PMR lasts for a long time - albeit at a very low level.
So sad to hear what happened to you. I have stayed with my G.P, who is learning along with me. The literature he gave me concerning PMR said 2 years, however, the GP realizes that this si not the case. He has decided that knowing my own body best, I should manage the taper. I am down to 1.5 mg of Prednisone. He would like me to be medicine free, because of possible side effects, but abides by my decisions and doesn't urge me to be Prednisone free.
don.t really know. My eye pressure did go down to an acceptable number. I just have to go by my body's reactions. Just came in after almost 2 mile walk on rough, rocky ground. Hope what is left of those worn leg muscles is getting stronger. Time will tell.
I’m in the USA and my first rheumatologist pushed me from 15-10 mg in a few weeks twice. I flared both times and returned to 15mg. I went to Mayo and they said I reduced too quickly. I switched to another rheumatologist hoping he would understand Pmr but on the second visit he said if you go over 2 years that it was something else and he wants me to be at 10mg by May. I’m just getting to 12mg by the dead slow method.
My GP physician assistant is more understanding and happy with my progress.
We will see what my next visit with the rheumatologist will be like.
I agree. Trouble is think my doctors will take as gospel what the rheumatologist said. Can never get to talk to a doctor. Asked for a bone scan last time but have no idea whether it’s being sorted as it’s 3years now.. Thank you all for all your help and support
You are SOOO not alone! This forum has been such a help in keeping me sane when 2 different doctors told me that after 18 months, I should be off the prednisone. What?! I even stopped yoga because the rheumy I was seeing said that my inner thigh pain (yes, bilateral) was due to yoga and not PMR. Fired her and moved on to a 'physiatrist' recommended by someone. (Yea, I don't really now what that is either.). Initial consult I liked her but she soon joined the 'off the Pred in 2 years' bandwagon. Ugh. I am so very lucky to have my GP who is wonderful. I asked her to take over and she now prescribes my prednisone for me, as long as we can keep it under 7.5 mg. I was diagnosed in 2017 (after a stroke that they all said was unrelated. Hmmm) and was down to 3.5 mg. Had a flare after my covid shot so I'm up to 5 mg at the moment. I hope your doctor will cooperate and listen to you. Best of luck. And stay on this forum....you will learn so much!
Hi Firchrs, I hate to break this to you, but your Rheumey is sorely out of date, very few if any PMR journeys only last 2 years, my was five year journey. 🙂
Tell that ignorant Dr to ring the PMRGCAuk charity Helpline and learn about PMR in the real world as opposed to the text books. I'm going into my 9th year with it
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