I have been tapering off prednisone from the initial diagnosis of 40mg in September 2023 and am now on 2mg and hoping to taper 1/4 every 4 weeks and see how I go. To be honest I am (was) proud of my achievement until I received a call today from my GP. He did not want to prescribe me and said I should have stopped now! I told him I would and described my tapering program, but he didn`t get it. After 20 minutes of describing why I still need to take steroids he gave in...reluctantly. Polymyalgia is real and the pain associated with this awful disease is also real but the way he spoke to me was that it is in my head, despite having , at its peak last September ESR levels off the scale at 300 . I check my blood every 6 weeks and am pleased to say they are normal again but I do still get aching hands, and shoulders, especially in the morning. I take my steroids at 2.45 in the morning as this has really helped pain.
Why is this such a normal event with GP and some Rheumatologists?
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Markandevie
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My GP seems to understand and has never queried when I ask for my repeat prescription. We need what we need! I am shocked at the reaction of your GP and I think that you should put a complaint in. I have been on prednisolone for nearly 8 years!
With GPs it’s probably more to do with the fact that they usually prescribe steroids on a short term basis for acute issues - not long term for PMR/GCA. Nor do many really understand that PMR lasts a lot longer than most of the articles state.
You have done really well to get to 2mg. I was diagnosed in May 2023 and am down to 6.5mg. I am staying there till after Christmas, will then start tapering again 0.5mg over 5 weeks.
I saw a new (to me) GP yesterday and she seemed very sensible, and one thing she didnt know (about current guidelines for frequency of blood tests for pmr) she said shed check and get back to me, which she did. Reducing going OK but aware it can change, not too worried about higher blood sugar as should reduce as steroids go down, but care on diet, ordering a bone scan so I can decide if bisphosphonates or weight bearing exercise best .... info on potential adrenal issues.Its depressing though to feel you depend on a particular doctor knowing their stuff. My surgery has been good, even receptionists careful listeners and pass on information well . I never had a phone appointment, all face to face so far.
I wondered if things like the opiates scandal makes them suddenly worry about people on any drugs long term, whether actually necessary or just never checked.
You are right, especially about the opioids. Mine knows little, if nothing at all about adrenals, PMR, etc. They act as if we want to be on steroids, so she merrily drops my dose by 1mg per 28 days. Hang any adrenal crisis that might ensue. Supposed to drop to 5 this weekend. She refused me a cortisol test and doesn't know what a synacthen test is. I spelled it for her. She said we don't do cortisol tests. It's right on the bloodwork req.🙄
Even worse is the fact that at 2mg pred, that is still plenty to compensate for poor adrenal function and he shouldn't just stop it without testing to be sure you are at least producing cortisol even if there is no way of actually testing whether the whole system is functioning reliably. And adrenal crisis is no fun - and could have you in ICU at best and dead at worst!
Is there another GP in the practice? Like KJ I would put in a complaint since after 1 year, you are way within the usual (inaccurate) claim it lasts 2 years.
There are many GPs who DO understand use of pred for PMR, usually older, more experienced ones or younger ones who trained somewhere where they got to meet patients with PMR or GCA, Actually though - if your ESR was that high, were you investigated at the time for GCA or LVV? LVV in particular may only appear looking like PMR but the inflammation is affecting large arteries in the trunk and if not effectively controlled could lead to considerable damage to the bloood vessels.
Thank you for the reply. I wasn`t checked for anything else even when inflammatory markers were through the roof. I am just thankful that didnt last. I have a had a terrible year, I had a spontaneous pneumothorax followed with 6 weeks in hospital due to infection as they were worried it could lead to sepsis. My GP has been supportive up until now and dont understand his stance on prednisone
That's a bit rough. Especially 6 weeks of hospital food in the UK! I wonder if he is concerned it was what contributed to the infection. Or is the practice having a crackdown on unnecessary or wasted prescriptions to save money and they are looking at everyone on any long term medication that isn't usually used like that. There are quite a lot of people on long term pred but in any given practice there won't be many PMR/LVV/GCA patients who need it for years. And there are still some rheumies who believe PMR is a short lived benign problem which often influences GPs.
Pro can you please outline the bloodwork that should be done at the lower doses of Pred like 5 mg or below so I can get your link and present it to my GP? TIA
Sorry, not really clear what you mean? Which link?
There isn't a lot of point doing even a basal cortisol at 5mg, that is still usually loads to suppress cortisol production. And if you feel fine it probably means there isn't much of a problem - what cortisol there is plus the pred dose is enough to keep everything functioning.
Hi, I believe that is right, having discussed the Synacthen test with my Dr previously , she said they will look to do this around 6 to 8 weeks post Steroid completion and the same 8 weeks with a Dexa scan to check bone density, is that correct according to your understanding of these situations?
Depends on your doctor level of knowledge I suppose. I wouldn't want to wait that long for either.
There is plenty of point doing a synacthen test once you are down to 3mg or so since it would be negligent to tell a patient whose adrenal function wasn't recovering at all to continue tapering at the rate some expect. The patient could well end up in ICU or even dead if an adrenal crisis wasn't recognised. The pred cured nothing, it is an ongoing management strategy so there is no "steroid completion" you can identify in advance, it is a moveable feast even once you are at 1 or 2mg pred - there is no guarantee you are near the end even then - and it takes up to a year even after being able to discontinue pred before adrenal function is reliably restablished.
As for the dexa - that's a bit late. One should be done at diagnosis to have a baseline - patients in this age-group may well already be in the osteoporitic range and those who are barely in the osteopeneic range don't need a bisphosphonate, just a good calcium intake and vit D together with advice on exercise to maintain bone density. Then another a couple of years later is advisable to see if there is any loss of bone density that could be blamed on pred. There isn't always - my bone density hardly changed over a period 12+ years on pred and I'm by no means the only one. It isn't always pred.
Thanks for the invaluable advice, From 15mg in Aug 22, I’m now down to 0.25 mg of Pred for my PMR, started taper from 0.5 in 11th November. I’ve been doing 1/2mg drops since 7.5mg and 1/4 drops since 2.5mg.
Like everyone I’m bored and peed off being on Preds, there’s a tendency to think, nearly cracked it, and to rush it, but reading the invaluable advice on here, it reinforces the tread carefully and slowly mantra, and that the next year is ultra important to keep being careful in lifestyle choices. I had issues mild at 3mg and severe at 1.25mg, but I’ll explain more in my forthcoming detailed post.
I’ll get onto my Dr to arrange, tuit de suite.
I think I’ll stay at this level for 2 months then do a long 2 month taper off, does that sound reasonable?
I had a baseline Dexa about 6 to 8 weeks into Preds, a bit late I know, unfortunately my Dr wasn’t aware, my reading on here meant I brought it to my Rheumatologist instead!
Interesting your take on in the equally evil Bisphonates and Osteopenia, that was never conveyed to me, by the rheumatologist!
Incidentally I had Osteoporosis since 9 years ago, and managed to improve it into Osteopenia through increased physical activity within 3 years.
So now I guess even at this level I need checking even if I end up staying here at 0.25mg long term.
Once again thank you for your excellent info, for all to see.
Actually, within the first 3 months of pred is the recommended timing for a first dexascan. The density doesn't change overnight even if most loss of bone density is claimed to be in the first 3 months - probably because that is when the massive doses that probably ARE associated with it are being given.
Bisphosphonates are not all evil - but I still think they shouldn't be used "just in case". I waited 14 years before my first infusion, given after a spinal compression fracture had been identified on an x-ray- but it hadn't been the source of my excruciating back pain 2 years earlier and my dexa was still little different from at the start. OTOH - you had a history of osteporosis.
Good question indeed!! I was lucky with my GP, but, have learnt via this Forum, that there appear to be too many GPs, who aren’t familiar with the correct treatment of PMR.
Damn Drs make me sick,wish they could have a taste of it eh?Clipboard kids who do not do enough research.Makes me angry.,🤬😡Glad he listened in the end.All Drs shoukd be made to spend time reading this forum ,make it compulsory!!!Good luck to you Markandevie.xx💐🎄😜😡
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Hopeful but still keeping fingers crossed!
Tapering - have I got it wrong?
So it's not PMR ??
Steroid reduction
Why are you still taking steroids!
