Prednisolone: I have been taking prednisolone now... - PMRGCAuk

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Prednisolone

90planetree
90planetree

I have been taking prednisolone now for 2 weeks at 20mg & 3 days at 15mg! I keep reading that people are getting good effects within days but I am still struggling, especially mornings! I wonder if anyone has had similar please, I was diagnosed with PMR on 06/08/20? I am having some blood test done tomorrow ordered by a rheumy!

15 Replies
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My first question would be, what are your activity levels? It also seems quite soon for such a big drop down with a diagnosis only 2 weeks before.

90planetree
90planetree in reply to SnazzyD

My activity levels aren't anywhere near before I was diagnosed with this. I hadn't heard of it before and you tend to follow what the professional advises as you don't know any different!

Thanks SnazzyD

I agree with Snazzy. 5 mgs is a lot to drop down by and so early in the disease. It is recommended that you don’t drop by more than 10% of your dose and do it in a tapered way ( 1 day a week, then 2, then 3 etc) if you aren’t already. Your symptoms should be settled before you start. It was 6 weeks before I was ready. There is no rushing this process, you just end up having to start again. Are you worrying about particular side effects? People can advise.

No not worrying about side effects, just following what I was told to do by a consultant rheumatologist as I didn't know any different!

Thanks SheffieldJane

PMRpro
PMRproAmbassador

Why did you drop the dose when you were still struggling - or did the rheumy give you a plan to follow?

Did you try to return to or maintain your normal level of activity? That is the main reason for the symptoms not reducing but some people need more (up to 25mg) and longer to get the 70% improvement looked for. I had a fantastic improvement with 15mg in under 6 hours but some bits of the inflammations took 3 or 4 months to clear up, especially hips and feet.

And mornings will continue to be uncomfortable if the antiinflammatory effect of pred doesn't last the full 24 hours for you - it varies between 12 and 24 hours depending on the person. The substances that cause the inflammation are released in the body at about 4-4.30 am and start to work then. The longer you leave it before taking the morning dose of pred, the more inflammation is created, the more the pred has to do and the longer it takes to improve. Taking the pred at 2am means it is in the system before the cytokines and they never get to make much inflammation and mornings are better. Alternatively, you can wake early, take the dose and settle down for another couple of hours by which time the pred is starting to work.

90planetree
90planetree in reply to PMRpro

Hi PMRpro

Thank you for the information. I am following the plan from a rheumy when he diagnosed me with PMR on 06/08/20. He told me to drop from 20mg to 15mg after 2 weeks and then after another two weeks to drop to 12.5mg and then 10mg and said nothing about the pain except that I should feel better within a few days of taking the prednisolone!

I will try taking the pred at 2am instead of 4.30am as I have been doing.

Thanks again and to the others who have replied to me.

PMRpro
PMRproAmbassador in reply to 90planetree

Hahahahahaha - he has obviously never had PMR! The expert recommendations ALL keep the patient at the starting dose for at least 3-4 weeks or until the symptoms have reduced and stabilised. They also say reduction steps in such a taper shouldn't be more than 10% of the current dose. 20 to 15 is 25%.

This is a far more realistic approach:

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

and even it can be too much at the start for some people.

Pain that appears immediately you drop (up to 24 hours or so) and then improves is your body getting used to the change in dose. Pain that appears and then increases is a sign the new dose is too low for the inflammation at present and you need to go back to the previous dose asap and get things stable again.It will work eventaully but in the first few months there should be no hurry to get the dose down too fast.

90planetree
90planetree in reply to PMRpro

Hi PMRpro

My recent blood test showed my CRP to be 235! I am worried about this, they are going to do more tests but why hasn't it come down?

Has anyone experienced similar? I am on 15mg Pred & was diagnosed with PMR on

06/08/20.

PMRpro
PMRproAmbassador in reply to 90planetree

Impossible to say - ranges from they didn't let you have enough pred for long enough to get it down to it is due to something else. CRP is a very non-specific indicator of inflammation even if it is better than ESR. Have you any signs of a chest infection for example - that can send CRP shooting up.

piglette has a very high CRP on an ongoing basis.

But from what you describe I think the primary reason your CRP is still high is because they didn't give you enough pred to start and not yet for long enough - even if this really IS "just" PMR. The 2015 Recommendations say "the lowest effective dose in the range 12.5-25mg/day", acknowledging that some people for various reasons need a bit more than the 15mg that seems to have become traditional. Almost all experienced doctors leave the patient at the starting dose for a month - or until the symptoms have improved and stabilised. Yours haven't, have they? The inflammation markers as well as the symptoms need to be more like normal before they even THINK of reducing the daily dose. Bottom line - instead of messing about they need first to try a bit more pred. And you also have a part to play: don't try to get back to pre-illness activity levels, be "ill" for a while.

That's the exact same protocol my Rheumy gave me - I swear some of them have no idea at all about PMR! Needless to say I had a flare - quite a bad one. I'm now following the slow taper schedule as advised by the many more experienced posters here and am finally, successfully at 10mg.

Slow and steady.

Reducing your dose of pred while still in pain will ensure you stay in pain forever. Only reduce when the pain is gone.

Manchild
Manchild in reply to paulst955

Yes, but for some of us the pain/stiffness is never completely gone.

I read a tip recently that said never reduce if you can't lift your arms up above your head, which seemed sensible advice to me

I needed 25 mg to get rid of my pain and I stayed there for a month. Being a cautious soul I decreased by 2.5mg per month to 15mg, then 1mg per month to 10. From there I have decreased by 0.5mg per month as I twice had trouble getting from 10 to 9. Presently on 3.5mg and will do slow taper from now on. All the best 🌻🌻

Hi, 90planetree,

I am in a similar situation to you in that I was diagnosed quite recently, on 31st July 2020, after having had blood tests and describing my symptoms, and I too started on a medium/low-ish dose (15mg in my case) of Prednisolone.

All my pain and stiffness went within 3 days of starting the medicine. This is what my doctor expected. But to me it was like a miracle. I still get tired, and I don’t quite feel that I have the balance of food/hunger/energy quite right - or at least, not how it used to be - but the latter is the steroids rather than the PMR.

So I would add my novice voice to those of the experts here, that it does not seem quite right to be reducing your dose if the starting dose did not fully do the trick for you, and before your follow up blood test.

For info, I am not seeing a specialist, so far I am getting along very well with my GP.

I had a blood test 2 weeks after starting the prednisone, which showed that the inflammatory markers had reduced, and on that basis and because my pain had gone, my doctor said I should reduce from 15mg to 12.5 mg 3 weeks after I had started the 15mg. (That’s more than 10% but - 3 days into the new regime - so far so good.)

I will have another blood test two weeks after starting the 12.5mg, and that will be used for my doctor and me to decide whether to reduce from 12.5mg, but again only after three weeks on 12.5mg.

And I think we will proceed like that, for so long as it goes well. She has warned me that when I get to lower doses it will get tricky to find the balance.

But, without wanting to worry you, it does not sound as if you have the balance quite right even at this early stage?

I think you are right to question your rheumy’s plan. Let us know how you get on.

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