My 1st flare. :(

[kay7954]

Diagnosed in May 2018 with PMR/GCA, started at 60 mg. I was clipping along just fine until I hit a wall and then wham, severe headaches, body pain, extreme fatigue and stiffness. This lasted about a week and a half. I could hardly walk yesterday and had some blurry vision and that is when I called the Rheumy. I told her what happened and she put me back at 20 mg from 10 mg of Prednisone. She wants me to stay at that level for 5 days then go to 17.5 mg. This is so disappointing, but I knew it could happen. I need to taper down a little slower this time around.

[kay7954]

Forgot to mention, I had some labs drawn last week when all this started. My sedimentation rate went from 16 to 33 in 2 weeks.

[PMRpro Ambassador]

"I need to taper down a little slower this time around."

Yes, I think so!!! To have got from 60 to 10 in 6 months with a GCA diagnosis is crazy. Relapses are common in the first 18 months after a GCA diagnosis - since most reductions would still have you at 20mg after 6 months it is not surprising you have flared.

And sorry but I shall disagree with Ms Rheumy - you need more than 5 days at 20mg before reducing and I would suggest just 1mg reductions at a time now. You did very well to get to 20mg so quickly, this isn't a race!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro - too fast!

Took me about 6 months to get from 60 to 20mg, and then twice as long to get from 20 to 10mg.

You can reduce reasonable quickly at higher doses, but as you get lower you need to slow down and take much smaller steps.

And yes, longer at 20mg to stabilise.

[SheffieldJane]

Me too Kay! It is very disheartening.

[Hidden]

Bummer. ...but the fist FLARE is the worst. Also, I was on 60 mg back in Jan/Feb and I am only now down to 17.5. You did taper fast!!!!

[Angiejnz]

This flipping illness has its own timetable, not to be messed with! I have had a bumpy road trying to taper too fast and my body lets me know I've gone beyond its tolerance despite my head reckoning that I'm ready. It feels worse than a game of chess, trying to work out my next move. (For those that know me - Chess do I feel a song coming on??? You know me so well 🤣)

[Sandradsn]

I'm no expert but I think that reduction is way too fast, listen to your body and if it were me I'd stay on 20mg till after Christmas at least! x

[Marijo1951]

I started at 60 mg at the end of July 2017. I only got down to 10 mg a week ago, so after 16 months. This has been difficult enough, but your rapid decrease sounds horrendous and unnecessary.

[kay7954]

Thank you guys, doing much better, I'm still at the 20mg for now. Headaches are trying to break through, but my vision is ok. I agree, I am going to take this a whole lot slower from now on.