Back up to 15 and no better!

[sealine30]

Something went wrong. Not sure what i know my markers were up about a month ago but last blood work shows everything normal apart from vit d which is borderline low. Both knees feel like they ate on fire all day and sieze up if still for too long and the shoulders just ache constantly. Been on 15mg for past two weeks and no difference. Is9 it worth getting referred back to rhumy or just up the pred some more?

[Rose54]

Sorry cant answer your questions but just to let you know I do sympathise with you

As in similar circumstances

Took 20 months to reduce from 15 to 8 doing ok now back to 15 .

Hope you get to the bottom of things

[PMRpro Ambassador]

If you have been on 15mg for 2 weeks with no difference you have two possible scenarios:

One is that you have PMR but need a bit more pred, 20 or even 25mg for example. That isn't uncommon and although 15mg has been the suggested starting dose for some time the most recent guidelines say "the lowest effective dose in the range 12.5-25mg"

Or you don't have PMR at all - and your description of your knees isn't typical of PMR.

You could try 20mg - and if that still doesn't help I think it is back to the rheumy again.

[Amkoffee]

I have to second what PMRpro said. You might find relief at another 5 mg, but if that doesn't work, I would suggest seeing your rheumy.

[sealine30]

Upped to 20mg and saw my GP (well, a GP in the practice) who hadn't read my notes, asked who had diagnosed me with PMR (think she thought I had googled it etc) actually looked at my discharge letter from the Rhumy (I was doing well at the time and the plan was to reduce from the 7mg I was stable on at discharge) Who had told me to increase my pred instead of reducing further etc etc. Was really hacked off with the consult and just wanted the extra pred so I wouldn't run out and a ref back to Rhumy. Got both eventually but had to agree to a 2.5mg fortnightly reduction plan. Worth it just to get out of the door! However knees are much better on the 20mg and shoulder pain is not so bad if I keep the keyboard work to a minimum.

[PMRpro Ambassador in reply to sealine30]

Hope you get a reasonably early appointment.