Slow tapering of prednisone : Hi, I’ve also been... - PMRGCAuk

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Slow tapering of prednisone

Golden20 profile image
9 Replies

Hi, I’ve also been slowly tapering my prednisone. My rheumatologist is very good, her response was to treat patients as individuals and not one size fits all, thankfully. Pred has been my bestie for 3 years. However I had a nasty flare up when decreasing to 4mg. I’d just had my second Covid jab. I don’t know if this was a factor. Now I’m tapering 4 days 5mg and 3 days 4mg so far so good. 🤞The Rheumatology nurse suggested if I have another flare up to combine the prednisone and methotrexate. I’m not keen to introduce an unknown medication though. Has anyone been on this combination of medication? I’d be very grateful for any advice. This site is so helpful and informative.

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Golden20
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cranberryt profile image
cranberryt

Do some research on methotrexate. Personally, I chose not to take it and my Rheumy was not happy about it. She is no longer my doctor for many reasons. I would suggest that a drop from 5 to 4 may be too much at this stage. 0.5 mg may be better long term to avoid flares. And yes, covid jabs can cause flares and that should not require a jump to methotrexate in my opinion.

Golden20 profile image
Golden20 in reply to cranberryt

Thank you. I did some research and to be honest, kind of decided against it. I know it might be ok for some. My daughter-in-law works in doctors and she told me that it is the go to Med to take, for many with rheumatoid arthritis at her practice. My rheumatologist is trying to edge me in that direction. She gave me a leaflet methotrexate and PMR. Her opinion was that it’s side effects are much less than with long term steroids use. I’m a bit like, I prefer the devil I know, to the devil I don’t. Thanks so much for your comments. I’m very grateful to hear advice and experience of other sufferers. It helps.

PMRpro profile image
PMRproAmbassador in reply to Golden20

Ah yes - but PMR and RA are different diseases which sometimes they don't seem to appreciate. At the AGM last week I think both the commented that they didn't think MTX was appropriate. There certainly isn't good study evidence as yet that it makes a significant difference - although one very good group is seeking a grant to look at it and answer the question once and for all - as they put it!!! If you can take it without adverse effects that is one thing - then it is maybe worth trying. At least you can say you have tried.

Golden20 profile image
Golden20 in reply to PMRpro

Absolutely. The jury is still most definitely out on this.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Look at FAQs, there is lots of information about MTX, written mainly by MrsNails - healthunlocked.com/pmrgcauk...

Covid jab very likely culprit for flare, but to be honest once that's under control don't see the point in adding in another medication at such low doses.

MrsNails profile image
MrsNails

Hi Golden - My first advice would be to taper by 0.5mg drops as basically you are dropping by 25% at the moment, so a much slower taper would be easier on you.

When l went on MTX l was stuck at 20mg Pred & it was now causing more harm than good so l need to find a way out of a Catch22 situation. For me it worked, l tapered easily & successfully to 7.5mg when l was very rudely interrupted - but that’s another Story!

Personally, l’d plump for a slower taper, in 0.5mg drops.

I don’t expect to ever get off Prednisolone - this has been discussed with me in the past but if l could get to 7.5mg l’d be a very happy bunny 🐰

PMRpro profile image
PMRproAmbassador

If I had got to 5mg safely on my own, nothing would induce me to try methotrexate. The experience I had was not pleasant and to be honest some of the problems I have had stem from that time - I may be biased but I do always wonder if it had anything to do with them. All it did for me in the month I held out was make pred effects appear or get worse. The fatigue that started the second week just progressively worsened until I had half a decent day just before the next dose was due and by the end of the month I could barely put one foot in front of the other.

I too had a flare after my second jab - nothing with the first though.

queenhermione profile image
queenhermione

I was just wondering how you were getting on with reducing. I started at 15mg back in September 2016 - I’m now down to 2mg having started again at 7mg a couple of years ago after coming right off a bit too fast and being back in full PMR mode.

I’ve had a slipped disc this summer but now feeling well enough to tackle it again, armed with CBD balm!

I had been doing the slow almost stop system with 0.25mg and then a week for it to settle down. I was wondering what you had tried and how it went.

I’ve loved Prednisolone but I think it’s time to say goodbye. My pred stomach is what wrecked my back.

My GP leaves me to get on with it, so my choice of methods.

PMRpro profile image
PMRproAmbassador in reply to queenhermione

"I’ve loved Prednisolone but I think it’s time to say goodbye"

It will be time to say goodbye if the underlying autoimmune cause of the PMR symptoms has fully burned out and gone into remission. If that hasn't happened - you continue to required pred to manage the inflammation or, like a dripping tap fills a bucket and eventually overflows, the inflammation can build up until you are back where you started.

Losing the fat deposits is possible - cut carbs drastically.

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