I have been treated for PMR for the first time since May 2022 (I'm a PMR novice at the moment). My GP put me on a plan to taper down the Pred. Unfortunately I haven't been able to stick to his plan. Reading the useful comments on this forum I can now understand why I haven't been able to. Had a blood test a few days ago and now awaiting his call to discuss results. Feeling VERY nervous about how I tell him his plan hasn't worked and that I am doing my own thing. He prescribed 30mg to begin for 5 days which was fine, then wanted to drop me down to 20mg for 7 days(that's when severe pain and stiffness returned in the mornings) 15mg for 7 days, 10mg for 28 days. (GP wants me to stay permanently on 10mg) I have stuck to this plan except have had to take an extra 5mg at teatime because mornings have been SO painful until my morning dose kicks in about midday. Any thoughts on how I handle my GP with my own dosage. Thank you.
First consultation with GP after starting with Pr... - PMRGCAuk
First consultation with GP after starting with Prednisolone.
Offer him this to read perhaps:
rcpe.ac.uk/sites/default/fi...
He is treating it as if that short sharp shock of pred is enough to clear out the inflammation - and it isn't. Why on earth it is beyond them to have a look at guidance from experts defeats me - the time to 10mg is usually 8-10 weeks not 3 and even that often doesn't work!!!
The key instruction in the taper is that it must be adjusted to the individual patient - but all that happens when you rush is that the symptoms flare and that makes it harder afterwards.
Thank you, I can agree with you. Even though I'm down to 10mg in the morning and 5mg evening I still have some symptoms in the morning which I can tolerate at the moment. I'm wondering if I can expect a flare up. Hope GP will understand if I mention this forum with good advise.🤔
As PMRPro says. Personally I had a few days at 15mg, then was upped to 30mg for five days, 25mg for 5 days then slow taper from 20mg. Started end of June and didn't get to thinking about 10mg until 7 months later. This is not something that can be rushed.
I'm afraid your GP is in the ranks of the 'one size fits all' brigade and in addition has very poor knowledge of PMR and how to manage it.
Please, don't be afraid of questioning him; many of us here have learned we have to be our own advocates for our health when things don't work for us. I would eat my hat if his advice worked for anyone with PMR.
You do need an appointment to see/ speak to him as soon as possible. Write down all your questions beforehand so that you don't forget anything and mention everything you've told us. As long as you are polite and you should expect a similar response from him.
Good luck and let us know how things go.🤞🏼
These are the guidelines from the charity’s website -and even they are a bit optimistic (!) but he may take more notice if them -
pmrgca.org.uk/wp-content/up...
And this is for you -although he could probably do with reading as well!
healthunlocked.com/pmrgcauk...
Thank you. This is so useful. 😊
Hi. Like you I began at 30mg, where I stayed for just over three weeks on the advice of GP.Then dropped to 25mg for two weeks, then20mg for two weeks, then 17.5mg for two weeks. Stayed at 15mg for 6 weeks. Then onwards down, but very very slowly.
Not saying it would necessarily work for you, as we are all different, but it may help to know this when you speak with your GP.
Good luck
Paddy
Thank you. Think I will try to stick on my dosage of 10mg + 5mg at teatime for 6 weeks not 4 weeks. Maybe the doctor can prescribe lower doses of my prednisolone to use after.
It is the clearing out at the start that is crucial - if there is still inflammation hanging around it doesn't give you much of a buffer as you reduce. Some of the inflamed soft tissue around joints (not joints themselves, the extraarticular areas) can take some weeks, even months to settle down. A good springclean at the start really does help - so this latest fad of starting with shortl lived but high doses isn't a good move.
It all seems far too much what is fashionable - older patients who started with a month or more of 30mg years ago often say that worked better long term. It is the same with the approach to GCA where the patient gets a 3 day pulse therapy with massively high pred doses given by infusion - studies have found that the total dose in the long term is often actually less which is really counterintuitive.
If I had been given that taper I would be lying on the floor screwed up in agony. I would think a lot of people are unable to keep up with their doctor’s expected taper plan, unless they have a good doctor who knows the rules of PMR. Yours obviously does not. It really distresses me when doctors give patients incorrect tapering information so it causes them a lot of unnecessary pain.
Thank you for your input. I will not reduce my Pred until the morning symptoms go.(have very mild symptoms in the mornings)
Mind you - it may be the morning symptoms don't go entirely - the inflammatory substances are shed in the body about 4-4.30am and start creating inflammation. If the antiinflammatory effect of pred isn't lasting for the full 24 hours until the next dose is due (it can be 12-36 hours depending on the person) then you will have some discomfort until the new dose of pred starts to work. More to be concerned about is increasing pain.
Or ask your GP to view these taper plans steroidtaper.azurewebsites.... to be honest GPs must meet and diagnose so many different ailments etc. every day - they are just a means for treating minor ailments and referring more serious things to the appropriate medical departments.
They do a very good job, IMO
Yes I agree with your comment. Hoping I can talk to my doctor about slow tapering without upsetting him.
Good luck. I found this group in 2016 when first diagnosed. I flared on my first reduction. My rheumatologist was open minded when I told her about the slower methods I learned here. She agreed I should try and said she’d write prescriptions for whatever strength pills would help. She offers the slower taper now to some of her patients.
Thank you. I hope my GP is as helpful.
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