Reducing Prednisolone after a flare

[Ladybird25]

I was diagnosed with PMR in September 2016 and commenced on 15mg Pred. At my rheumatologist's instructions, I've been slowing reducing my Pred, but had got stuck on 9mg, much to her annoyance. Two weeks ago I had my first flare and on the advice of my GP went back up to 15mg, which made a huge difference within an hour! On his advice, after five days at 15mg to control the flare, I started coming back down again in alternate day 1mg reductions. The GP surgery asked to review me, so along I went a few days ago. I had got back to 12mg and was feeling better, although still quite symptomatic. The GP advised me to stay at 12mg for two to three more weeks and then return for another review. He told me that if I was more comfortable and could function better at 12mg than 9mg, why would I want to go back down again...? If it was up to the rheumatologist, she would have me off Pred by now!

My question is, will this prolonged period at 12mg affect my reduction back down to 9mg and will I need to plan a much slower reduction? I had been planning on continuing the alternate day 1mg reductions, although at 9mg I had raised ESR/CRP and increasing anaemia, which has sidetracked my rheumatologist down the cancer investigation route... My "homework" between appointments was to get myself at least down to 8mg, and she can't understand why I haven't been able to. With a GP who tells me to stay at 12mg, I haven't got much chance!

[DorsetLady PMRGCAuk volunteer]

Hi ClaireJG,

Think your Rheumy needs to take a lesson from your GP - he sounds much more sensible and aware of PMR than she does! And she's supposedly the expert! She might be annoyed, but that's tough!

If you had a flare at 9mg then that tells you, and everybody else concerned, that it was not enough to control your inflammation - as your CRP/ESR reading probably confirmed. If you feel okay at 12mg, then as your GP says why rush back down to 9mg?

You may need to taper slightly slower than previously because you need to ensure that at each drop you are still taking enough Pred, and it usually takes about a week, sometimes a little longer, to know that.

As we're always saying, it's not a race to get to zero - you need as much Pred as you need, and that varies from person to person, day to day. As long as the PMR is active you need the Pred - and at the correct level, or there's no point in taking it.

If you don't get down to 8mg by the time you next see the Rheumy tell her -"sorry the dog ate my homework".

Take care.

[Ladybird25 in reply to DorsetLady]

Hi DL

Thank you so much for your comments. They make so much sense. You've hit the nail on head with so many points, and I feel more empowered now, particularly when thinking about seeing my rheumy. I'm still smiling about the dog eating my homework...! Nice one

I must admit, life is so much easier and more comfortable on 12mg, so I won't attempt to taper further yet. I was so pleased (and surprised) that the GP wanted me to stay on 12mg, but he obviously seems to know what he's doing.

Thank you for you help!

[SheffieldJane]

I think the Rheumatologists would change their tune after one day of the awful pain. To say yours lacks empathy is an understatement.

Unless of course there is something about steroids accelerating cancer. Nothing I have read so far seems to suggest this connection.

Either way you need the rationale behind your treatment plan. We are much more likely to follow orders if we know why. Good luck!

[Ladybird25 in reply to SheffieldJane]

Hi SheffieldJane

Thank you so much for your comments.

I must admit, I'm disappointed with my rheumy and feel that I'd rather continue with my GP from now on. I get the impression that she's not that familiar with PMR... She certainly doesn't seem to appreciate how painful it can be. The letters she writes to my GP are always inaccurate, and when I confront her about them, she tells me she never checks them and lots of her other patients say the same! Hmmm.

Thank you again!

[PMRpro Ambassador in reply to Ladybird25]

Then suggest it would be both helpful and courteous if she did!

[PMRpro Ambassador]

I'd stick with your GP who seems to have got a good grip of what happens if you reduce too far too soon - you get the symptoms back. The pred has cured nothing - it is managing the daily dose of new inflammation which will go on as long as the underlying autoimmune disorder is active. The fact the ESR/CRP rose again shows the inflammation is now there again. The anaemia is probably "the anaemia of chronic illness" but it doesn't hurt to investigate to be sure it isn't cancer - but she should have done that at the outset before plumping on PMR as the diagnosis.

As DL says - this is not a race and trying to run instead of walk usually results in one thing: a flare. You get there just as soon going slowly instead of rushing into it like a bull in a china shop and flaring, having to go back to a higher dose and start over again. Remeber the tortoise and the hare...

[Ladybird25]

Hi PMRpro

Thanks so much for your comments. They make so much sense and like DL's comments, really hit the nail on the head! I recognise myself as the person trying to run instead of walk, so looking back, I'm not surprised I had a flare. I need to slow down, which is what I haven't been doing, as I've been trying to keep going through the pain and inflammation.

I really appreciate your advice, thank you!

[PMRpro Ambassador in reply to Ladybird25]

And especially don't try to push through the pain - it isn't labour!!!!!