Slow tapering Prednisolone below 10mg: Hello... - PMRGCAuk

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Slow tapering Prednisolone below 10mg

gardenning
gardenning

Hello everyone, I was diagnosed with PMR and GCA in September 2019 and have been steadily tapering Prednisolone from an initial 40mg to now getting to 9mg. This is my second attempt to get below 10mg, having had symptoms and blood results showing inflammation was increasing again. I was reducing the Prednisolone by 1mg per month, but this time around I've slowed tapering to follow the pattern described in Kate Gilbert's book - six days at starting dose, one day at new dose until the new dose is reached for the whole week. What I'm not so clear about is how long should I remain at the new dose before attempting to taper further. My Rheumatologist is in agreement with what I'm doing, but also wants me to have a bone scan, prior to being prescribed Methotrexate, which he is advising would be the way forward if I am unable to reduce the Prednisolone without a further flare up. If anyone has had similar advise and has been given Methotrexate to help with reducing steroids I'd be very glad to hear how everything has worked out. Many thanks,

7 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Tapering plan.. I found in most instances I could go from one tapering plan -spending last week completely on new dose - straight into new reduction. If I knew something slightly stressful or out of the ordinary was on the horizon - holiday, Christmas etc (pre Covid !) then I’d stay on new dose for an extra week or so before starting new taper.

At only 18 months in, I would suggest Rheumy is bit premature in wanting to add in MTX ....getting from 40mg to 10mg in that time is not a concern...unless he’s one that believes the illnesses only last 2 years!

In guidelines, the tapering suggested for 10mg and below is 1mg every 4-8 weeks depending on patient.....if you can maintain that level, then don’t see the need to add in another drug which can affect liver.

Thank you very much for sharing and for your advice on tapering, I really appreciate hearing from someone who knows what it means to go through it all. I have to say I'm not that keen on the idea of adding in another medication, I'm actually really hoping that by taking the tapering as slowly as I can that I can avoid this. You're right too, about the Rheumatologist, when I was first diagnosed it was said to me that it would take two years for me to recover; as much as I'd like to believe this, following the posts that are shared here, I can see the reality is very different from the theory. Thanks again for your support and insight.

PMRpro
PMRproAmbassador

I tried mtx - I lasted a month before the adverse effects persuaded me it wasn't for me. I'm at a much higher dose than you - and if I were at 9mg after only 18 months since a GCA diagnosis I would be very reticent about adding another drug with its own set of adverse effects. GCA is quite prone to flaring in the first 18 months - slow and careful is the order of the day.

There are no guaranteesmtxt speeds up tapering off pred- you need pred as long as the disease is active and mtx has no proven effect on the GCA, However - it seems to be flavour of the month at present - wish I knew why! It is supposed to act as an adjuvant - making the pred more effective so you get the same effect with a lower dose.

When I developed the taper Kate describes in the book I said that you can either spend a week or two at the all new dose to be sure it is still enough or carry on straight into the next taper. You are going so slowly you are likely to notice if symptoms start to surface again so you can stop - and that is crucial.

Lonsdalelass
Lonsdalelass in reply to PMRpro

The last time I spoke to my rheumy in December, he said that methotrexate might be the way to go for me to get me off the steroids. I was on 2.5 then, and I think he said this because I had flared in July when on 1.5 and took myself up to 5 for a few days then back to 3, following your advice. I'm due to speak with him again in April, but I'm not keen on going onto mtx after reading posts and experiences on here. Besides, I've managed to get to 2mg since December, so that's proof if I go slowly I shouldn't need anything else. That's what I'll tell him.

PMRpro
PMRproAmbassador in reply to Lonsdalelass

NOTHING, absolutely nothing would persuade me to take any purported steroid-sparing drug if I was at 2.5mg! And any doctor who suggests it wants his head read ...

Prof Dasgupta chooses to keep some patients at 2-3mg indefinitely because he finds it reduces the risk of relapses - and it is such a low dose it is doing no harm at all.

Lonsdalelass
Lonsdalelass in reply to PMRpro

Thank you PMRpro, that's what I think too.

My husband has GCA it is also known as Temporal Arteritis. He also started on 40mg steroids tapering down to 9mg over a period of time, but anything below 9mg he has a flare up a relapse, this went on and off for sometime. He was put on methotrexate it is working he is now down 7mg steroids. GCA is unpredictable the inflammation markers can shoot up without warning, hence the relapse, certainly methotrexate has helped in reducing the high dosage steroids, time will tell whether this combined treatment will work sufficiently to enable him to stop steroids completely. Wishing you all the best.

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