Tapering stuff

[Angiejnz]

Just a query.... If I were to notice a difference in dropping from 60 to 50 pred, when might I notice.

[PMRpro Ambassador]

Probably immediately because at this level it is more likely to be steroid withdrawal (the change to a lower dose) than a flare. If the dose isn't quite enough there is no way to tell when you might notice, it depends how much too low it is. But steroid withdrawal starts quickly and then improves. Symptoms returning get worse over time.

[Angiejnz in reply to PMRpro]

So the creeping hip pain that's trying to make its presence felt is something I've got to learn to manage for the next week until a second drop. Fluey stuff has been a bother but it's only day 1 for goodness sake. I didn't expect anything for a least a few days so very surprised. Thanks for your help you and the vollies are amazing

[PMRpro Ambassador in reply to Angiejnz]

Creeping hip pain isn't a GCA symptom - and at 60mg I'd hope even bursitis might improve, mine did even at 15mg though it took a few months.

If the hip pain gets worse I think you should speak to your doctor. Something I learned this last week is that steroid-induced avascular necrosis can start within a month - and that needs identifying sooner rather than later.

[Angiejnz in reply to PMRpro]

I've had CT scans and MRI that show no osteoporosis or bone deterioration of the hips or pelvis. It's more like a bursitis pain that gets cranky. Osteo surgeon, opthalmic surgeon, spine fusion and neuro surgeon are supporting gps pmr diagnosis and I see a rheumatologist next month. I know I'm atypical....I lost weight taking Prednisone 😂 My description creeping pain refers to the fact it's getting a little painful in my hips already, my worst area far beyond shoulders.

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

Would hazard a guess the fluey feeling is steroid withdrawal - I used to feel at like that! And sort of premenstrual - only lasted 2-3 days.

As PMPro suggest hip pain is probably something else, and needs looking into! At those doses I had no pain, from anything!

[Angiejnz in reply to DorsetLady]

Thanks for that, the hips have been thoroughly examined and imaged showing beautiful spherical hips, unusual in that I've played a lot of sport and I'm overweight. The ortho and gp started the discussion about autoimmune problem before doing the blood tests and all results point to pmr. The pain went away when I started pred too

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

Ok,

Just another area of pain to add to the already long list! Lucky you! Or are you just being greedy? 🤨

[Angiejnz]

Law of averages, if I get it, doesn't that mean someone else won't? Always looking for the bright side 😁

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

No good looking anywhere else....it’s too depressing!

As someone this morning said when asked if he was alright (he’s in his 80s) - well I’m here! Can’t ask for much more!

Mind you he hasn’t got PMR or GCA 😉

[Angiejnz in reply to DorsetLady]

My mantra is that I got up this morning, lots of people didn't. I don't muddy it with how or when I got, I'm not a morning person at all 😁

[SnazzyD]

I notice fluey symptoms and headache from day 1-4 for 2-3 days. Flares tend to take longer like a week or more to start cooking.

[Angiejnz in reply to SnazzyD]

You have been so helpful, fluey headache stuff comes and goes but pain is ok so so far so good 😎