do I need more prednisolone?

[Bobbiegirl]

Hello fellow sufferers! I was diagnosed PMR in February after 5 months and started 15mg Pred. Now down to 6mg but struggling. Broke my arm in June, put house on market (sale still going through), stepdaughters mental health reached very low point and just had surgery in unbroken arm. Went down from 7 to 6 the day before surgery. Day after surgery discovered I also had shingles. Such fun! So a stressful time but I am reluctant to slow down my reduction of Pred . Seeing GP Monday, who has been wonderfully supportive so just wondered what you all thought was my best course of action. I am stiff, sore (but not in agony) and very down. Thank you

[SnazzyD]

That sounds like quite an optimistic reduction plan even with all your bumps in the road! Was this by instruction or are you one of those left to their own devices? The trouble with PMR is that you have to play to its tune rather than the other way round. If you push it too hard you run the risk of having to go back towards square one, so what your body says goes. The Pred is only there is stop complications from your autoimmune activity until it burns itself out, not to cure you. If your pain is present then so is inflammation.

At what dose were you ok and can you explain in more detail the nature of your struggling? Are you aware of adrenal function needing to be reinstated once below 10mg too?

[DorsetLady PMRGCAuk volunteer]

Bit of a nightmare all in all -too fast a taper initially which probably didn’t help. Neither would have reducing just before surgery - so increasing a bit after it might have been sensible.

Sorry but no point in not taking enough Pred -and with all you’ve been through you probably need to go up a bit.. maybe only to 7mg or 8mg.

Plus as  SnazzyD has said adrenals may be struggling. See this -

healthunlocked.com/pmrgcauk...

But you need to get your PMR back under control first and foremost. ..you can think about adrenals once that has happened m.

[Bobbiegirl in reply to DorsetLady]

Thank you so much, I appreciate your support. Will talk to GP on Monday but think I will go back up to 7 or maybe even alternate 7 and 8 because I really feel I’ve gone back a stage. So disappointed!

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

I know it’s disappointing-but you’ve only had PMR less than a year -so there really is no point in rushing -it lasts as long as it lasts…and nobody can say how long that might be..

[SheffieldJane]

As well as the good advice you have had, I would suggest that you talk to a therapist. You obviously have an overload of stress and you could find this helpful. I have found it a great boon during past difficult, insolubles.

[Bobbiegirl in reply to SheffieldJane]

Thank you Sheffield Jane, it’s been a rough few months. Good advice.

[Charlie1boy]

Methinks you have excellent advice from the earlier replies. I wouldn’t even begin to contemplate a reduction in your circumstances.

Good luck.

[Flivoless]

You have tapered far too quickly. Pred fools you into thinking that as the pain has gone so has the PMR but then the PMR strikes back,. It dictates to you not you to it.

[PMRpro Ambassador]

Slow down - even on its own it is on the fast side at this level and with all the rest - far too fast. Half of patients take up to 18 months to get to 5mg. That means the other half take longer. To get to 6mg in under 10 months is way ahead of the curve - and you are running the risk of going backwards. The PMR is in charge - not what you want ...

[Bobbiegirl in reply to PMRpro]

Thank you all for your advice. Saw lovely GP this morning and I am going to have 8 weeks on 7mg and then review . Oh how I would love to get my mojo back!!

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

Then follow a very slow tapering plan we talk about on here -and only 0.5mg a time…

[Bobbiegirl in reply to DorsetLady]

I certainly will, we discussed only going down half mg rather than all way to 6. You live and learn…

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

Yes you do…. from yours and others experiences…. What looks achieveable on paper very often isn’t in real life 🤨…. some doctors get it, some don’t!

Luckily yours sounds as if they do….