How long should I stay on initial dose of a Pred ... - PMRGCAuk

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How long should I stay on initial dose of a Pred for PMR

Feelingpoorly profile image

Hi all

I’m 67 and was diagnosed with PMR early October this year. I’m taking 15mgs of Pred daily as the initial dose. I feel good just a little residual stiffness in couple of fingers and occasionally discomfort in my wrist (right hand) but overall pain free and mobile thank goodness.

My question is how long should I stay on this dose for ? as I understand it, you should start reduce as soon as possible to try and ward off long term side effects. My GP practice (usually brilliant), seems unable to cope in this difficult Covid environment and although I have scheduled telephone appointments to discuss current progress and any issues with the doctor, my GP doesn’t always phone me as planned (today another telephone appointment didn’t happen ) I totally understand the pressures for NHS and I wondered as I have an appointment with rheumatologist on 9th December should I not worry about this and just wait until I see the consultant?

Any advice would welcome.

20 Replies

Hi Feeling not so poorly, glad the initial dose has done its magic. Others more knowledgeable than I will soon be along but from my experience there is no need to panic and try and reduce to quickly. Think of PMR as snakes and ladders, a mistake and you can slip back down on the time line. Slow and steady is best. In regards to lowering your initial dose this should be when you feel the I inflammation has settled and then only by no more than 10% at a time. Remember that Pred only provides relief from the symptoms it doesn’t get rid of PMR which will burn out in due course. Your objective is to use the lowest dose that provides comfort and let’s you get on with life while PMR does it’s own thing. I started on 30mg two years ago and now down to 1/2 but in no rush to get off. Don’t want to slide down a snake😁

Others will provide you with links to taper plans or just search this site.

Good luck on your journey.🤞

Thank you so much - I will take your advice and take it slowly

My GP suggested reduce each month - roughly ok until lower doses - see DSOS method

Thank you for replying - I will look up DSOS

PMRpro profile image
PMRproAmbassador in reply to Feelingpoorly

I think she means DSNS and you can only look it up here:

healthunlocked.com/pmrgcauk...

Feelingpoorly profile image
Feelingpoorly in reply to PMRpro

Oh great thank you

PMRpro profile image
PMRproAmbassador

The usual approach is to remain at the starting dose of 15-20mg for 4 to 6 weeks before dropping 2.5mg for a further 4 weeks.

This is an easy to read article which was aimed at GPs to allow them to manage PMR better when they didn't have direct access to theumatology advice.

rcpe.ac.uk/sites/default/fi...

But every rheumy will have their favoured approach and since it is not long until your appointment, you probably don't need to worry too much. The most important thing with the starting dose is to not to reduce too soon if you still have symptoms and not to reduce in too big steps - some will try to say 5mg at a time but that is mostly too much. Top experts say a taper step should not be more than 10% of the current dose although 20/17.5/15/12.5 does often work but it isn't the end of the world if it doesn't and if 2.5mg at a time is too much you then should try 1mg drops. As we say a lot - it isn't slow if it works!

Feelingpoorly profile image
Feelingpoorly in reply to PMRpro

Thank you - I think most of my worry is that because of covid , normal support has not been there - I’m certainly not complaining my GP practice really is brilliant but this is the first time I have been poorly and to date my consultation, blood tests and final diagnosis have all been done whilst sat in the car park of the surgery and the only advice I can get is online and some sites are a bit scary! Needlesss to say I’ve been feeling vulnerable even though I very grateful to be fully mobile again and that Pred is working.I’m very pleased to find you all so thank you.

PMRpro profile image
PMRproAmbassador in reply to Feelingpoorly

I don't think we are scary - so if you have questions do ask and you will get tried and tested advice from people who walk the walk.

Feelingpoorly profile image
Feelingpoorly in reply to PMRpro

You are definitely not scary. - I am so happy I found you all

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Feelingpoorly

Definitely hope we're not scary...truthful yes, which in some cases might be scary I suppose - at the beginning.

"as I understand it, you should start reduce as soon as possible to try and ward off long term side effects" -

No, you get the initial inflammation under control ( which as PMRpro has said can take 4-6 weeks - although some doctors believe it's quicker) - then you reduce -preferably on a monthly basis provided no return of symptoms to find the LOWEST dose that gives you the same relief as the initial dose did.

Sounds simple and straightforward, and sometimes it is, but not always, particularly if you (or your doctors) try to get you to reduce too quickly.

Have a look at this - hopefully again not too scary, but maybe

😉healthunlocked.com/pmrgcauk...

Thank you for reply and offering this link - it’s so helpful

Just a (not so quick) update to share my experience. In an earlier post, last year in fact, I wrote that PMR burns out in one to two years. Well that’s what I’d been told by my GP and Rheumatologist. The only other person I knew that has the condition was off Prednisolone after 18 months. Luck her... turns out that she’s back on it. I was corrected by the more experienced amongst us that 6-years is the norm. Well, here I am, three and a half years on and I still have PMR. When I first took prednisolone I felt great: life changing. What is now clear to me though, is that we all react differently and it seems that we should follow instructions as best you can to tapper off Prednisolone, but accept that it may take several years.

I was put on Methotrexate early in my treatment and have been on 20mg of MTX weekly for 18 months. I tolerate it well. I had struggled to get below 12mg of Prednisolone for a few months, and my rheumatologist was keen to reduce the dose for the reason below. I’m now down to 4.5mg of Prednisolone and have managed a couple of weeks at 4mg daily, but symptoms started to return, so I’m occasionally back up to 5mg and trying to break through the 4mg threshold: it may take several months. I must add that my rheumatologist put me on MTX early in the treatment because my DEXA scan confirmed osteoporosis. Hips -3.6 and I think -4 is the worst case. I’ve had two back fractures during the last three years too . With hindsight, I can understand why the Rheumatologist wanted me to use MTX in favour of Prednisolone. The main side affect of MTX for me is fatigue, but I’m feeling the benefits of exercising, although it’s a chore. I stopped exercising for 4-months after my last vertebrae fracture, but I can now do an hour and a half on my bicycle without pain. I’m targeting 100km a week and I’m feeling good. The sun is shining today so I’m just about to go on my 35km route. I can’t be bothered but I know I will feel the benefits. For my osteoporosis I’ve had annual Zoledronic acid infusions (two) and continue with the usual 70mg calcium supplements morning and evening . Next DEXA scan is in March. I have an invitation to order the vitamin D supplements having received an email offering them from the NHS (I suppose we all have). I had a kidney stone 6 years ago, so may not be able to take them: any thoughts from the experts?

Fingers crossed things are heading in the right direction and understanding that 6-years is quite normal for many of us to suppress the disease, is good to know. Accept this and keep positive. 😊

Wow quite a journey for you - thank you for sharing, I love how positive you are - I certainly need to readjust my thinking on this illness and find ways to accept that slow is best but also try and take some control over how I approach my recovery - thanks again !

There are many much worse off and I feel so young at heart. Great that we can be treated for however long it takes 😊. Must admit that some of my friends thought I’m crazy when I bought a big motorbike this year 🤣

I love that you are so full of life - very inspirational

I fully understand the feeling of being left a bit by your surgery. PMR takes a lot of adjustment, but you are amongst friends here who can provide support and advice. You are not alone!

I totally feel that from you all and I so appreciate it - thank you

My GP did not recognise I had PMR so in the end I went to a rheumatologist privately who diagnosed it in about 5 seconds. He was then was then keen on me reducing as quickly as possible which was a disaster. As PMRPro suggests 2.5mg after 4-6 weeks is a good basis, although some people can go for 5mg and others just 0.5mg. I would do your reductions on a four week basis or more, not less than that. Then wait to check you feel good before reducing again. Don’t ever reduce if you feel rough just because your doctor tells you to. You should be having a Dexascan to check your bone density and also be prescribed vitamin D and calcium tablets if you are taking steroids for PMR.

Thank you so much - this is very useful information.

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