When a 5mg increase doesn't get on top of a relapse

[EscapedtoWales]

I have been reducing 0.5mg every 6 weeks in the hope of not having further relapses and have got down to 5.5mg. Unfortunately I woke last Wednesday with severe shoulder pain. I sort of knew this might happen as my ESR the week before was 29. I have increased 5mg but it is not keeping on top of the relapse. Just wondering what I should increase to next and for how long? And would I then need to start reducing 0.5mg from this higher dose? Must say I am so upset - I have had PMR for 6 years in October and this has given me steroid myopathy which I have had for the last 2.5 years which has impacted on my mobility Thanks

[DorsetLady PMRGCAuk volunteer]

How long have you been on increased dose?

It may need a bit longer-you can stay up to 14 days without causing an issue with dropping back down. Maybe try that, obvious if doesn’t work then maybe add another 2 or 3mg.

Once, and only once under control, you can drop back down to just above dose at which the flare started…probably best to do it it in 2 or maybe 3 steps, stopping at each one for 5-7 days.

This link gives more info - healthunlocked.com/pmrgcauk...

[EscapedtoWales in reply to DorsetLady]

Thank you so much - that is such useful information. Really appreciate your reply.🙂

[DorsetLady PMRGCAuk volunteer in reply to EscapedtoWales]

Hope you soon get it sorted, it’s very frustrating at times….

[EscapedtoWales in reply to DorsetLady]

It certainly is!

[PMRpro Ambassador]

Bear in mind that you aren't tapering relentlessly to zero - you are looking for the lowest effective dose and that really isn't the same thing,

I do appreciate the steroid myopathy is a major problem - I had it with methyl prednisolone but when I was switched to prednisone it reversed just with walking. Obviously though - your PMR is alive and well unless you did something to make it worse.

DL has given you the links - if you CAN get the flare under control in up to 2 weeks you can drop back to the last good dose straight away without a slow taper. But that is supposing that this is an overshoot flare and not an increase in disease activity because the effect is the same. How often were you having the blood tests done? Do you know when the ESR started to creep up and what is the lowest reading you have had?