Pred Anniversary - Thanks to HealthUnlocked - PMRGCAuk

PMRGCAuk

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Pred Anniversary - Thanks to HealthUnlocked

Skinnyjonny profile image
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It's my 1st anniversary being on steroids and it's hard to believe all the weird and wonderful things which have occurred over the last year. The human body is a truly wonderful creation and it never ceases to amaze me what we can achieve. Thanks to you all for your support which has helped me get to where I am today. I've reduced from 20mg to 3.5mg and now "Running, swimming and even climbing free with a big smile again" :-) I'll keep raising PMR-GCA awareness and understanding. Thanks guys. Please feel free to visit me on Facebook or on Twitter @skinnyjonny

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Skinnyjonny
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suzieh profile image
suzieh

Have you had any days when you feel washed out and ill along the way? I think I am doing quite well, 20 mg - 4.5 mg in 2 years, but I still get rough days. I have started to split my dose half before bed and half when I wake up with good results for the last few weeks. Forgot last night and felt pretty rough this morning! Just a reminder I need to respect the PMR.

Skinnyjonny profile image
Skinnyjonny

Hi suzieh - When I was in bed and later in a wheelchair I was lethargic and had to sleep in the afternoons. I went downhill very fast (Jan - May 2013) before I got the Pred ... then I've had a weird and wonderful journey! I reduced to 5mg be the end of December and since then reducing by 1/2mg every 6-8 weeks with the aim to being somewhere near no steroids by the end of this December. I take Pred at 5.30/6.00am and rest for 45 mins which has really worked for me. I have always worked with the illness (see Kate's book) and am now swimming (up to 100 lengths), running 5km Parkruns (in my PMR-GCAuk NE Support vest) every Saturday morning and just started climbing rock again ... Happy days again :-) I've listened to my Support Group, GP, Rheumatolgist, family and lots of great friends plus attend weekly hydrotherapy and physiotherapy sessions to support a daily stretching programme. I'm more than happy to share my health and fitness logs and compare notes. Take care suzieh x

suzieh profile image
suzieh

Very interesting! Thanks for reply. In a good week I am now doing Pilates 2 x. Yoga 1x and 1x aqua aerobics and quite a few hours of gardening at home and on our allotment. Like you I find the exercise helps. The first 9 mths I had PMR were hard - lots of sleep and feeling feeble ........ now, in second year lots of improvement and I can manage more. Still get odd days when I can't do much but they are getting fewer. Feel quite determined to get off the steroids in a couple of months so currently putting up with niggles and odd pains as I reduce. Due a blood test so hope Dr approves the next reductions. Keep doing well!! And keep posting please

to encourage us all!

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