Still no prednisolone

[DevonMichael]

Pleased to say it was a month yesterday since I stopped prednisolone and so far so good. No signs of GCA reappearing. Good luck to those treading the same path!

[EdithWales]

Well done Michael

I am on 4.5 tapering to 4 and after 3 and a half years on it with one flare I am getting impatient. I know I have to take my time but hoping I shall soon be able to join you

[SheffieldJane]

Pleased to hear this Michael. Is it a particular struggle getting your former fitness back? Or just what you'd expect?

[DevonMichael in reply to SheffieldJane]

Physically I have a degree of stiffness and aches in my lower limbs. Sometimes I get up from chair and walk like a cow-boy! I am reading this as muscle fatigue and a post prednisolone side effect. I am still able to walk four mile round trip to watch Stoke City at home matches.

I feel better psychologically and my appetite has normalised and I no longer have to manage a medicine chest!

[SheffieldJane in reply to DevonMichael]

I'll take that!

[PMRpro Ambassador]

Well done - now for the real test! And remember - it takes a year or so to be back to normal!

[DevonMichael in reply to PMRpro]

Thanks for your always sage comments. The positive thing is that now I have the knowledge. Know the warning symptoms. Have an emergency stash of well dated prednisolone. Hopefully it will be clear skies ahead but I am stronger and better prepared from my experiences!

[Hollyseden]

Well done you!!

[markbenjamin57]

Well done DevonMichael - thanks for your update, post-Club Zero.

Fingers crossed you'll continue on the same path, and it's always good to hear a (relatively so) success story from those who've emerged from the PMR / GCA 'tunnel'.

I'm sure you're right: after getting a 'hammering' from this nasty, chronic auto-immune illness - and also the indirect effects of the medication to control it - we still need to take things steady for a while afterwards. But, as you say, things can and often do get better.

MB

[Hidden]

Keep going Michael it's music to my ears. 17.5/15 at the moment & having few niggles. Good luck mate.

[cornishjan]

Well done, but a word of warning. I had GCA/PMR diagnosed in 2012 and have three times got off the Pred or MTX, each time feeling fine but within 4-6 weeks my inflammation levels, especially CRP started to creep up. The last time, despite feeling not just Okay but really well, my consultant ordered a PET/CT scan which showed I had an inflamed aorta and sub clavical aortas and also inflammation somewhere else - too shocked at that stage to continue to listen. My advice is to continue to have blood tests for several months after you come off the Pred. My PMR didn't return so I thought I was fine but GCA in the temporal arteries doesn't produce any symptoms until it is quite bad and in the aorta it has to be really bad before you have noticeable symptoms. Far better to monitor it and catch any potential problems in the bud.

[DevonMichael in reply to cornishjan]

Thanks for sharing your experience. I am due to see rheumatologist and will check on blood tests.

[bert403 in reply to cornishjan]

I have been on Prednisone since Sept 2014 for GCA...been down to 1mg for several months, I feel it's my security blanket. Since you mentioned your Aorta I decided to write. I was not feeling good, went to Er and had CT scan. I now have a ascending aorta aneurysm...needless to say I'm not handling this very well. According to my ultrasounds going back to 2011, nothing was there until 4 months after starting 60mg of prednisone that it started to bubble. Two Thoacic surgeon's told me caused by prednisone...Need to get off because it makes it grow. After suffering with GCA for 3 yrs , I now have a real life threatening issue, I need open heart surgery to cut out the aneurysm and repair 2 leaky valves. Next CT scan will determine the size and if ready to prepare for surgery. Thanks to this poisonous deadly drug. I don't want to frighten anyone that is why I never posted this...just be aware. Sorry...yes I am very angry. Never expected anything like this. Good luck to all.

[Rabbit1951]

Well done Michael. You must be soo happy. I am down to 2mg per day and hope to drop completely by Xmas. I was first diagnosed 18 months ago and started on 10 mg.

Best wishes for th future and keep us up to date 😀🏄

[allykat]

Well done and encouraging news for those of us who have only just achieved "zero" status.

[Jackoh]

Well done Michael!! I think though just after I wrote this I thought that we can sometimes think it was what we did and how we did it that brings us to this position and then we can sometimes feel guilty if things are not going in the right direction!! So really pleased for you Michael but also realising that PMRGCA comes and goes when it wants to!!!!