Prednisolone : I was diagnosed with PMR 14th... - PMRGCAuk

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Prednisolone

Horizon12 profile image
28 Replies

I was diagnosed with PMR 14th February 2018 and I have had a few flares since then. I am currently taking 1mg prednisolone daily and this seems to work for me. GP is eager to get me off them completely. I have explained to him that this dose works well for me, but he still wants me off prednisolone. Should I just keep taking the 1mg anyway?

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Horizon12 profile image
Horizon12
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28 Replies
SnazzyD profile image
SnazzyD

Well, it’s great you’re held nicely at 1mg. Have you asked exactly why it is a problem? Getting their agreement would be an idea if only because one say you’ll run out and will need another prescription. It is also desirable to have your medical record reflecting the true situation, especially if you’re record is shared electronically for other health related bodies to see eg. out of hours services.

Horizon12 profile image
Horizon12 in reply to SnazzyD

He just replies long term prednisolone is not ideal. I know that I am a nurse, but it works for me. Having a phone consultation soon and will just be persistent.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Horizon12

Good job he wasn't my GP, I'd probably have ended up completely blind - rather than partially...4 & half years on Pred!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

And I'd have spent the last 11+ years in pain instead of living a reasonable life.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Ever had the feeling you're banging your head against a brick wall - or only 90% of the time!🤦‍♀️

tangocharlie profile image
tangocharlie in reply to DorsetLady

Yes that's exactly how it feels dealing with fixed-mindset doctors

123-go profile image
123-go in reply to DorsetLady

Yup!

Horizon12 profile image
Horizon12 in reply to DorsetLady

It's definitely horrible having PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Horizon12

There’s a lot of worse things...GCA being only one of them.

Horizon12 profile image
Horizon12 in reply to DorsetLady

So true. I thank goodness don't have that. Yet.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Horizon12

It’s not a given that you will...in fact most with PMR don’t...

GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated.

Horizon12 profile image
Horizon12 in reply to DorsetLady

Thank you for that information.

PMRpro profile image
PMRproAmbassador in reply to Horizon12

Longterm 1mg pred is infinitely preferable to long term pain relief that doesn't work or long term antidepressants because of constant pain ...

Horizon12 profile image
Horizon12 in reply to PMRpro

Much rather stay on 1mg. Had depression when I was first diagnosed now it's not so bad. Good days and very bad days. Off work at the moment with a fractured wrist and not healing as quickly as I hoped it would.

piglette profile image
piglette in reply to Horizon12

Tell your doctor that Dr Dasgupta, the UK guru on PMR, recommends staying in a low dose indefinitely to stop flare ups. You could offer to give your doctor his contact information!

Horizon12 profile image
Horizon12 in reply to piglette

Thank you, will do

piglette profile image
piglette in reply to Horizon12

Don’t let them get away with pushing you!

PMRpro profile image
PMRproAmbassador

Yes!!!! Why on earth does he want you to stop? Prof Dasgupta told us in a webinar a few months ago that HE often keeps patients on 2-3mg indefinitely because it reduces the incidence of relapses! If it is good enough for him - who is your GP to complain about 1mg! Find another more sensible one!

Horizon12 profile image
Horizon12 in reply to PMRpro

Thank you for you prompt reply. I will just be more insistent at my next phone consultation.

SnazzyD profile image
SnazzyD in reply to Horizon12

Bad being “long term Pred” as a blanket reason is a bit lazy. Long term 10mg is world away from 1mg.

Horizon12 profile image
Horizon12 in reply to SnazzyD

That's true

PMRCanada profile image
PMRCanada

Really?? He’s insisting you drop the final mg that keeps your symptoms/inflammation in check?

The side effects at that low of a dose are negligible. Yet, it still does the trick.

I’ve been on pred since May/18, only down to 9/8.5 due in part to flares caused by following a rheumy’s textbook taper they insisted on. I refused to continue seeing that rheumy after 3 appointments.

My GP oversees my care and has asked me to aim for 5mg.....NOT “0”. He says it a more realistic goal and the side effects at 5mg are lower.

Advocate for your health...you know your body better than anyone, AND your doctor should be working WITH you which includes listening to your feedback. All the best.

Horizon12 profile image
Horizon12 in reply to PMRCanada

I'm going to stand my ground and stay on 1mg.

tangocharlie profile image
tangocharlie

I'm hearing so many stories recently of GPs wanting patients totally off steroids, even low doses, I guess it's the Covid scare and lack of information about whether they worsen your chances or not if you do get it. But it contradicts with what some enlightened leading rheumatologists like Dr Dasgupta and Dr Mackie are saying. Get your Dr to look at what they say. I'm in a major flare now because I was forced to reduce my dose back in May. Dig your heels in and insist on a proper explanation, in writing if you'd rather do that than get into an argument.

Horizon12 profile image
Horizon12 in reply to tangocharlie

Sound advice, I'm not scared to speak my mind. Will definitely mention the documentation. I hope you are soon back to your normal.

tangocharlie profile image
tangocharlie in reply to Horizon12

You can find a link to Dr Dasgupta's talk on the PMRGCAuk website

Horizon12 profile image
Horizon12 in reply to tangocharlie

Thank you

tangocharlie profile image
tangocharlie in reply to Horizon12

You could try: I know you are concerned abut L-t risks of Pred, but the the experts in PMR say that on balance the benefits of staying on a low dose and preventing a flare, relapse or GCA developing out-weigh the risks of continuing at a low-dose.

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