steroids only lasting 12 hours

[Susananne]

I have started taking 5 mg Prednisolone (up from 2.5mg because if increased pain) at 2 or 3am as suggested by a post on here but by 1pm I am in pain again in my shoulders/top of arms and need to take pain killers . Any suggestion please.

[SnazzyD]

Hello there. Can you fill us in on detail about your journey? Advice can then be tailored to you. Things like when you were diagnosed, what starting dose was, symptoms, how it has gone with reductions of steroids etc.

[Koalajane]

Which painkillers are you taking and do they help?

[DorsetLady PMRGCAuk volunteer]

As SnazzyD has said a bit more info to put things in context please.

Doesn't look as if you asked specially about raising Pred - and it if it's the result of a flare you need to add 5mg to dose not up to 5mg.

The advice to take meds at 2-3am is to help first thing in morning if you are having issues then [after daily shed of cytokines, the substances which trigger inflammation at 4am]

However, if your dose doesn't last 24 hours because it's too low, so it matters not what time you take it, it's still too little.

[Susananne in reply to DorsetLady]

I was diagnosed 3 years ago and given 30 mg Prednisolone and followed the normal tapering pattern . Had various hiccups along the way resulting in back up to 25 mg then slow tapering . Got down to 2.5 mg about 2 months ago but still had shoulder and arm pain on waking which I took paracetamol + and ibroprofen . Pains got worse a couple of weeks ago so up upped to 5 mg but no improvement. I phoned rheumatology advice line and they can’t help till I have a blood test and I have to wait 2 weeks for that . Rheumatology were happy to let me continue tapering and discharge me before these recent problems and I have never seen a GP about my PMR .

[DorsetLady PMRGCAuk volunteer in reply to Susananne]

Hi again…thanks for reply -and PMRpro will see this - we both read all posts/replies.

Unfortunately the normal tapering plan isn’t as straightforward for everyone as some doctors think - hence the hiccups you may have had along the way.

What we would say on here, is never continue tapering if you think your symptoms are returning… that will just make things worse. You need slightly more Pred, not less.

Your doctor may think your PMR should only last a certain time, but it’s not as simple a that, it works within its own timeframe- it’s a self-limiting disease which means it goes into remission when it thinks it will, not before.

As for Rheumy dept stating they can’t do anything until bloods taken is wrong.. I know it’s probably their protocol, but if you are flaring your symptoms must be the key to action - not just bloods. , Bloods very often lag well behind symptoms, and for some they are unreliable anyway.

At I said our advice is to add 5mg to dose you last okay at for a short period to get things back under control - and once that has happened you can get back on track with your tapering.

This link gives info on that- but I do realise that as you are under Rheumy you may not feel you can take action yourself.. and if you do before your next blood test, that may not show anything if you have increased Pred.

healthunlocked.com/pmrgcauk...

You’re between a rock and hard place at the moment.. but I’d know what I’d be doing in your situation ..😊

[Susananne in reply to DorsetLady]

Thank you for your reply I think I will up to 10mg as the pains have lasted nearly all day today despite pain killers and I havent got an appt with the rheumatologist and it could be weeks before I get one that’s assuming I will .

[DorsetLady PMRGCAuk volunteer in reply to Susananne]

Okay - please keep us informed… hope it works for you.

[Bothan in reply to Susananne]

Suzanne, the only thing I can say, as been in your situation a number of times since 1st diagnosed a no of years ago, I have found the advice I get from both Dorset Lady and PRM pro invaluable . Fellow sufferers who live with it. Discovering this site has help me hold on to my sanity!! So thank you guys. Now tell my Rheumy/GP when I have a flair what way I will taper!!

[DorsetLady PMRGCAuk volunteer in reply to Bothan]

Fortunately I'm no longer suffering... 😊.. but happy to pass on nuggets you can tell your doctors about..😂🤣

[Susananne in reply to DorsetLady]

I finally spoke to the rheumatology nurse who informed me that the consultant said keep taking 5 mg Prednisolone for 6 months then we will review it! That was after I told her I was in a lot of discomfort and needed pain killers twice a day just to get by . I have ignored her and taken you advice and increased my prednisolone to 10mg which I take at 3am and for the first time in 3 months I have woken pain free 😂😂please advise me what I do next ie how long do I stay at 10 and when I should start tapering again . My blood test came back ESR 50and CRP 19 both marked abnormal .

Thanks again looking forward to hearing your advice

Sue

[PMRpro Ambassador in reply to Susananne]

I think you will need to discuss this with your GP too since the rheumy obviously isn't listening, With the markers that high and symptoms you are very obviously at too low a dose to manage the inflammation and NEED more pred. And you will need that prescribed.

Normally for a flare you would stay at that higher dose for up to 2 weeks before dropping back to the last dose where you felt well. Were you OK at 6mg before dropping to 5mg originally? Because you have been so much lower in the meantime it is very difficult to know what you really need and it is also complicated by you not having seen a GP for the PMR. They have no context and the consultant you were under is saying stay at a dose that is obviously too low. Hopefully one of your GPs will realise there is a problem,

[Susananne in reply to PMRpro]

I wasn’t too bad at 6mg (manageable) but the lower I tapered the worse the pain got. I haven’t ever seen a GP about my PMR and when I mentioned my blood results he just said oh rheumatology dealing with that .

I will definitely stay at 10mg for 2 weeks and if I’m still feeling ok will try to taper from there 1mg a month . If this is not right could someone please advise me x

[PMRpro Ambassador in reply to Susananne]

Just want to pick up on "manageable" - for us that is an immediate red flag. Once you have symptoms as you are reducing your dose, that is a sign there is left-over inflammation that is enough for you to feel. That means the dose you are at is too low to be fully effective and if you leave it, that inflammation will build up, like a dripping tap will eventually fill a bucket and overflow. That is what has happened to you.

You are never reducing relentlessly to zero - you are looking for the lowest effective dose that gives the same symptoms relief the starting dose did. You have reached it and gone past. I think restarting from 10mg is a good idea - normally we would say you could drop back to the dose above where you flared but I don't think that 6mg is going to really be enough either so looking for it again is needed. And maybe by the time you get bak to 6mg, it WILL be enough, even 5mg may be enough next time.

Enjoy Christmas now you are feeling rather better - but don't think you can do everything!!!! Rest and pacing is required too.

[DorsetLady PMRGCAuk volunteer in reply to Susananne]

Hi -advice as per link I sent earlier -but here again-and you should be able to drop back down -preferable to 6mg initially. Then taper to 5mg (either in one go or via 5.5mg) so you are back on 5mg for next review..

healthunlocked.com/pmrgcauk...

Good luck, and as PMRpro says can you get a GP on side. Rheumy Dept really should be more proactive with raised blood levels -at least checking again in another week to see if there’s a trend and not just a one-off..

[PMRpro Ambassador]

Whatever time you take the pred, it will only do its job if you are taking enough and while we don't know much from what you have said, obviously you haven't been on enough. But we do need to know rather more to be able to help.

[Susananne in reply to PMRpro]

I have replied but can’t see if you have got it

[PMRpro Ambassador in reply to Susananne]

As DL says - I see and read everything so you only need to reply to one of us. She has said exactly the same as I would so I'll not write it again.

But I will add you need to develop a relationship with your GP, especially since your rheumy obviously isn't aware that a patient being fine at 5mg doesn't mean they will still be OK at any lower dose. PMR doesn't just disappear after a few years and you can just abandon the patient. The journey continues all the way through the taper until you are off pred without a flare - and for another 6 months or so.

[WeAreAllMutants]

My dose works best when split. At 4.5 daily now, 2 in the morning, 2.5 in the evening - been splitting dosage for years. Experiment & see what works for you.

[PRL1957 in reply to WeAreAllMutants]

LOL. excellent moniker - and so true. (Otherwise we'd all still be single-celled organisms).