Dilemma

[Pangolin43]

Good morning everyone, I haven’t posted for a while and I hope you are all well.

I have a dilemma! I started Pred at the end of March 2021 15 mg for 1 month,. Tapered to 12.5 mg 1 month and the 10 mg for 3 weeks as symptoms returned. Upped my dose to 12.5 again for 2 months and I’m trying to reduce to 11 mg on advice of rheumatologist. Waking up on my 5th morning of taking 11mg I feel all my stiffness is returning, particularly in my hands, wrists and knees. I also have a pain in my back which I’ve never felt before. The inflammation levels in my last test are still higher than they should be but are coming down 21 CRP 29ESR. I think my rheumatologist feels I’ve been on 12.5mg for long enough. She wants me to drop to 10mg after 1 week of 11mg. The way I feel right now I don’t believe this is possible for me. Any advice? Is this a flare or should I persevere as it’s ‘early days’ . 🤔. Thank you in advance.

[PMRpro Ambassador]

It is a flare in that she wants you to go to too low a dose for YOU at this stage. Not everyone is the same, disease activity varies and some people may need to start at a higher dose in order to reduce as quickly as the doctor, who has never had PMR, may think they should.

In an ideal world, you need to stay at enough pred to get that CRP down to normal range before you even think of reducing the dose. I don't know what you can do - is this the GP who is being so stubborn in the face of evidence the dose isn't enough?

[Pangolin43 in reply to PMRpro]

It’s a rheumatologist. I won’t see her again until October

[Pangolin43 in reply to Pangolin43]

Shall I go back to 12.5 where I was comfortable and perhaps try your tapering plan?

[DorsetLady PMRGCAuk volunteer in reply to Pangolin43]

You need to get ‘comfortable’ again, whether that’s at 12.5mg remains to be seen….hopefully, but no guarantee.

Then, my advice would be 1mg reductions, not a drop to 10mg (although a recognised taper in the guidelines, not achievable for any ..in fact I would say most! ).

Whether you use a slower taper or an overnight drop, if you go below the level of Pred your illness needs, you will flare.

The slow tapers were/are designed to stop steroid withdrawal symptoms or for those who cannot obtain smaller dose tablets….they don’t get you from a. to b. more quickly, just more comfortably.

[Pangolin43 in reply to DorsetLady]

Thank you for your advice 😀

[PMRpro Ambassador in reply to Pangolin43]

Then you need to get a GP onside and get this sorted out - if you push the reduction you will end up back where you were and another 2 months is too long.

[Pangolin43 in reply to PMRpro]

Thank you PMRpro

[123-go]

I'm sorry you find yourself in this position. You really shouldn't reduce your Pred until the inflammation in your body has been controlled by the previous dose, i.e. until you are pain free. A quick look at your earlier posts tells me that your rheumatologist is rushing your tapering. You should now go back to the dose at which you were pain free and then follow a more sensible plan. I would advise you to report your current symptoms to your rheumy and ask her what she believes is the cause. If she can't answer that satisfactorily a change of rheumatologist may be in order. That may seem drastic but you need to have confidence in whoever is managing your condition.

[Pangolin43]

Thank you 123.

[SheffieldJane]

You’ve had the good advice. I feel as if attitudes towards Prednisalone have hardened since the Pandemic began and some doctors are feeling justified in delaying and under treatment and encouraging tapering that is too fast. This will be because of perceived vulnerability to Covid 19. In my view this is spoiling the efficacy of a good drug. I don’t know quite what we can do as we need a doctor on board. We know to carry on with all the sensible precautions. Somehow this has to be got across to our doctors.