Adding age to every post. Also quantity of prednisone before and present.

[YuliK]

I think it would be a good idea that posters give the minimum information about themselves.

YuliK 76 years

Started 25mg

Present 7:5mg

Thank you

[DorsetLady PMRGCAuk volunteer]

We’ve asked this many times...and people do for a few days, and then forget again.

Plus a little more information on their profile would help as well! Doesn’t need to be war and peace - and once it’s there you don’t need to do it every time. Gender and country very useful.

Me- female

Diagnosed April 2012

GCA aged 65 (undiagnosed 18th months) start dose 80mg

Remission - Sept 2016

[PMRpro Ambassador]

Everyone has a profile page they can put such info on and it can be more detailed. I'm sorry - but I'm certainly not going to put it on every reply I write!! Not least because it is pretty meaningless and depressing for others in my case

But if you insist:

Age 66

PMR started age 51

Diagnosed age 56

Started on 15mg, currently on 15mg - have been down and up and down and up ...

[YuliK in reply to PMRpro]

Fair enough. I would say unfortunately you are a very very special case.

[Hidden]

Hi, Good idea.. I have updated my profile but here ya go...

Melissa - 64

Diagnosed November 2017

GCA & PMR

40mg to 60, mg to 80 mg and now down to 13.5mg

[HeronNS in reply to Hidden]

Hi Mamici - check your date!

[Hidden in reply to HeronNS]

Bl**dy Hell, I hope I'm NOT still taking PRED in 2107!!!!!!!! Cheers!

[PMRpro Ambassador in reply to Hidden]

Oh I don't know - they are always looking for the secret to eternal life!

[YuliK in reply to Hidden]

Possibly a Freudian slip. 😂

[Ozark in reply to Hidden]

You gave me a laugh!

[JanboC]

Female, 64

Diagnosed GCA April 2018

60mg, now 17.5mg

[Hellyowl]

Hi,

for the record, aged 66, diagnosed GCA 2017, 60 mg, currently on 4.75 mg.

Plan is 3.5 mg when I see Endocrinologist in May.

[Longtimer]

Well, I`m 67, diagnosed at 60 (doctor said it was very young...…..rubbish)

Was told to drop steroids quickly, hence that`s why I think I am still struggling 7 years later...changed rheumatologist, he was worse....very arrogant, now do it myself with GP....

Started on 15mg....felt wonderful...…..but now, was on 8mg till 3 weeks ago, had an investigation at hospital and losing a close friend....the stress has caused a horrible flare....so now trying 10mg for a few days...but pred causes me balance/blurred vision etc....but...I keep positive that it will work out one day....would be happy to just get to 5mg...and will then throw a party......if I have the energy!!

[Berylholley]

Diagnosed in May 2018. Started on 40mg now on 5.5mg prednisolone due to have cataracts done. Any advice about dose. I am also "marigolds" can't seem to sort it out re my profile.

[Ozark]

I'm 75 years old.

Have had PMR since January 2018.

My initial starting dose pred was 15 mg and quickly reduced to 7.5 mg. I've recently increase the dose to 9mg in an attempt to reduce the awful fatigue and exhaustion that accompanies this disease. Have only been at the 9 mg level for 4 days now but it seems to be having some effect on the fatigue at this level. For me, the fatigue has been worse than the pain. The degree of pain I've experienced after the initial surge has been uncomfortable but tolerable most of the time. But the exhaustion at moments has been killing. I've heard this described by others and I surely can empathize.

[YuliK in reply to Ozark]

I totally empathize with you Ozark regarding the

chronic fatigue...

I found the higher dose of prednisone, the more exhausted I felt.

You will soon get a handle on the pmr, but as PMR/pro advises, 0:5mg at a time. Very slowly is the trick.

Good luck.

YuliK

[Ozark]

Interesting that for you increasing the amount of pred produced more fatigue. At least so far, I seem to be experiencing less fatigue with the dose increased to 9 mg. Now I'm wondering how long I should stay there at 9mg. Still, if that is my magic number and it provides me with relief I guess I'm stuck with it for a while even though, like everyone else on this site, I would prefer to be off the pred sooner rather than later.