Summer Flare: I have had PMR & GCA for 638 days... - PMRGCAuk

PMRGCAuk

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Summer Flare

16 Replies

I have had PMR & GCA for 638 days. In that time I have tapered from 80mg down to 9mg. Recently, because of of two back to back flares, I find myself back up to 15mg and feeling okay. The question is, how long do I stay here before I attempt to taper down again?

PS - In the spirit of transparency, you may/may not remember me as mamici1.

16 Replies
SuziCutie profile image
SuziCutie

O dear so sorry to hear about the flares. I same as you with conditions and diagnosed Dec 17. Had 2 flares.

Hope you will soon get good advice x

HeronNS profile image
HeronNS

I'd say it's safest to stay there a month. I know you'd like it to be less time but given your experience with GCA I think caution is called for. And then use one of the slow taper methods, I'm sure you've already used one in the past, but don't be tempted to speed things up because you feel well. I've been victim of that several times and it isn't worth hurrying. In the big picture, is a week longer at a particular dose really so bad?

At least this time you're starting from 15 mg. :)

SheffieldJane profile image
SheffieldJane

Personally, if I was feeling ok and it was only a few days, I might try to go straight back down, and straight back up if my body didn’t like that. Otherwise I would start a half mg dsns taper back to 9 mgs stopping at the first sign of trouble. Good luck! Sorry your summer has been blighted by this. These low doses are the devil.

fmkkm profile image
fmkkm

Hi there,

If it were me I would stay there several weeks. Two flares back to back is pretty clear your body was not happy. The other thing I always think about is how frightening a GCA flare is and just feeling ok and having some peace is nice too. I’m not an expert, just someone who has lived with this beast breathing under my door for 4 years.

Best/fm

PMRpro profile image
PMRproAmbassador

Until you feel OK and all those flare symptoms have disappeared and then add a bit - as Heron says, maybe a month.

How did two flares so quickly happen? Did you increase and then go back to your former dose?

Welcome back.

in reply toPMRpro

Yes. I was impatient.

PMRpro profile image
PMRproAmbassador in reply to

You have done so well to get to such a low dose in under 2 years - despite the agonies at the start.

yogabonnie profile image
yogabonnie in reply to

how can that be_? you impatient? heh heh. welcome back!!!

And good good luck with this. it is FANTASTIC you got to 9. amazing!!! keep on truckin

Rimmy profile image
Rimmy

Lovely to see you back here with such an 'Idyllic' name - and with your usual creative imagery which used to make opening your posts so enticing !! But sorry about the flares. Still I have had PMR/GCA about only 6 months give or take longer than you and I have only got to 11.5mg (just) and was on 12mg for more than 2 months after coming down from a 'flare'. I'd be cautious and go pretty slow - this is a better idea in the end as yo-yoing can mean taking even more cumulatively and in the end as PMRpro often says 'you need what you need'.

XX

Mary63 profile image
Mary63

Welcome back Melissa!

powerwalk profile image
powerwalk

Oh that's just bazaar!!! I was looking at your website only this morning!!! Loved your Eagles post! I too saw them in Dublin this Summer!! The experts will answer the tapering issue! All the best.

Pennythedug profile image
Pennythedug

So pleased to see you back Melissa.

enan-illuc profile image
enan-illuc

Idyllic,

If there is one thing I have learned from my GCA and PMR is patience. I do not think the GCA/PMR holds to any schedule and is 'waiting in the wings' to teach us patiece. Welcome back.

Grants148 profile image
Grants148

Welcome Idyllic,you will find plenty of friendly and informative support on this forum. I am sorry that you are having problems with your condition,it is always hard to find the right dose of Pred.,when flares occur,there are some people who do eventually manage to come off the pred,but it is not easy to reach that goal. I am sure you will be given good advice here from people who have much more experience than me ,and l hope that you will soon feel much better x

Longtimer profile image
Longtimer

Hi, hope you are able to lower and get back on track again....many of us struggle...me 7years...have major stress at the moment with something horrible happening to my sister..she only has me to support her....so I'm trying hard not to react....so hoping the PM R doesn't either!....

Good job we have this forum for guidance....

Welcome back.....onwards and upwards......

Joaclp profile image
Joaclp

With the name Idyllic, you will soon be writing pastoral poetry to to your Mistress GCA. Welcome back!!! I hope the expert and experiential advice here will serve you well. I guess your knee surgery and neuropathy (as triggers to flares) are in the past.

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