Flare update

[Choco-Holic]

Just a little update regarding my previous post (not sure whether I should have added to that post or create a new one). The day after I’d posted I got a call to go the next day for an urgent scan of my arteries to rule in/out GCA so held off the meds till that was done. Thankfully all looked good! However, I was still left with no treatment plan as the rheumy nurse rang and said because the scan was clear no meds were required! I then asked what I was to do about all thePMR pain (I think she’d forgot that this was what I really rang up about initially). Eventually, 7 days or more later she’d got in touch with my rheumatologist and I was told to take 5mg for 4 weeks then 4 mg for 4 weeks. I’ve just yesterday got an appointment to see rheumatologist on 11th April to see what plan will be going forward I guess. Just like magic, the pred did its work in 48 hrs and apart from my shoulder ache (which was the last pain to disappear last time around) I’m pretty pain free. Could I please ask PMRpro and Dorsetlady if you think that this timescale is ok or should I try a small reduction before the 4 weeks? As always, ever so grateful for any advice. Thank you

[DorsetLady PMRGCAuk volunteer]

Probably best to start a new post -PMRpro and I will see existing one as we follow all posts- but not everyone will.

As you have an appointment in month’s time, I’d stick with what you have been advised for now -and discuss the way forward with Rheumy then..

Good to hear you’re feeling much better.

[piglette]

Starting at 5mg is a very low start dose, it is normally between 12.5mg and 25mg. If it works I would not complain though.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

It's not a start from scratch though... it's more of a relapse. So rheumy is hoping that a smaller dose may get things under control.. if not, then they have to rethink...

[Choco-Holic in reply to piglette]

It is, but hoping it’s just a flare that can be controlled. Initially 5 years ago I was taking 50mg for GCA. Fingers crossed, but only time will tell

[piglette in reply to Choco-Holic]

Hope it all goes well. I did not read up on your background!

[PMRpro Ambassador]

I think your rheumy's plan sound well thought out. And it does seem to be working.

[Tescohednesford]

You're lucky with your tapering....my Dr recommended every 2 weeks by 5mg...When I told him I was really struggling every time I dropped a tablet...

Oh perhaps that's to much...drop I mg every 2 weeks....

I will post my update!

Good luck!!

[Choco-Holic in reply to Tescohednesford]

my goodness, that is a bit harsh. I do feel very lucky with my rheumatologist and hoping that I’ve caught my flare in time. Good luck with your taper going forward

[DorsetLady PMRGCAuk volunteer in reply to Tescohednesford]

Every 2 weeks is still too quick.. and we say ad infinitum... it can take that long before your body "knows" the current dose is enough..if it's not then you flare. It applies on very small reductions as well as the bigger ones - but is maybe not so obvious- until you done it 2 or 3 times. If that's the case, then you aren't 100% sure what your last "good" dose was.

Never fails to amaze me [or perhaps it does] that some doctors don't realise that!