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Hi, my name is Anne, I am 60 years old and live in the south west of England. I have a rather lively Parsons Russell terrier and two elderly cats. I was diagnosed with Gca in March 2016, had a negative temporal artery but as my symptoms were so specific, terrible sickness and head and eye pain on the right side only which would not shift with a weeks worth of increasingly strong painkillers and anti sickness drugs I was admitted to hospital and given the great news of GCA,! Since then from 60mg of prednisolone I managed to get down to 5mg before I had a huge flare. Too soon you cry, which I realise since joining this wonderful site! So back up to 60mg and as at Jan17 down to 10mg where I am staying for a while before trying the dead slow method to reduce. I like to walk our dog as much as I can and have continued to go to Pilates classes which I think helps fight off some of the side effects of prednisolone!

11 Replies

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  • Hi Anne,

    Please stay at 10mg for a good while yo make sure you are okay. Really okay.

    Not going to say anything about your reduction times! Except good luck.

  • Thank you DorsetLady, not planning on reducing any time soon, despite the plan from my rheumatologist!

  • Yes, I wonder sometimes who thinks them up!

    Love Jack Russells - very intelligent dogs - too much at times.

    Take care.

  • Hi Anne, welcome from me.

    You seem to have your priorities right! Walk the dogs, forget about the Rheumy reduction plan, and keep up the Pilates.....all good things. Keep it all going for the winter months and thin about reducing in the Spring (which may bring some warmer weather if we are lucky).

  • Hi Anne, yes agree with all that has been said do follow our site with the reduction they really do know what they are talking about,if it was down to my rhumy i would still be very ill, good luck and as i say please take notice of the people on here, they got me better within 3 years very grateful,

    My name is Anne and I am from the sunny north east ,

  • Hi Anne, I too have GCA. Had a very difficult time w pred at first. It is a rare disease and it us hard to find a good rheum.

    Have reduced from 100 mg of pred to 2 ( 5yrs) -- slow method is best . you are dealing both w pred and the disease. Slow is best.

    I have had flares and have dealt w them similarly. You are doing it the best way.

    Wishing you much luck and the path towards better health.

    All my best,

    Whittlesey

  • Thank you so much for your reply Whittlesey. Glad to hear you are down to 2mg of pred. 100 mg must have been absolutely horrendously horrible for you! Not very good grammar from me but it must have been. Good luck for your final reductions!

  • Thanks, Ann. Yes, it was difficult. Better now, thanks. Hope you are surviving with these diseases.

    All my best,

  • Hi Anne do you maybe think you are reducing too fast. I was diagnosed in Jan 2015 with PMR and GCA and was on 80mg.

    I'm down to 5mg with some pain and stiffness in my thighs and neck but not bad, I just keep an eye on my CRP and ESR because they always reflect on pain I have. And I was back to see rheumatologist on Thursday and CRP was 4 and ESR was 6 take care

  • Thank you Elizcarroll, yes I definitely reduced too fast in the beginning, not my rheumys fault and before I found this site. I am lucky that I only have GCA, not PMR but this means I don't find it that easy to work out if I am heading fir a flare. It does seem to affect my CRP though so my GP has agreed I can have my blood tested before I make any reduction. Glad to hear you have managed to get down to 5mg and your bloods are good. Be reassured I am being very careful! Thank you for your support x

  • Hi Anne I was diagnosed with PMR to begin with, but sometimes I think maybe I just had GCA , because started off with pain and stiffness in my neck, and flu like symptoms, and then pains in my thighs and got so bad, that I couldn't get up off chair or get out of bed, and i was diagnosed with PMR, and I was on 20mg and when I was reducing ( that was doctors orders ) I reduced down to 12.5 over 2 weeks, and then developed jaw pain couldn't open my mouth, arteries very prominent at side of temple and then the headaches, and thanks to good friends on this site including Eileen, they told me to get to A n E, where I was admitted, I was put on 60mg and had a biopsy next day which was positive, I was in for 4 days and felt fine leaving hospital,

    But the next day I developed severe headaches, rheumatologist didn't want to increase my pred, so prescribed pain killers, which didn't work, but a week later I lost sight in right eye but it returned, I had 3 episodes of this which was very frightening, my dose was increased to 80mg, and I was fine then, so sometimes I wonder if it maybe it was GCA all along

    I do try to take anti inflammatory foods, like ginger, tumeric, garlic, take them everyday , I like to think they help, weather they do I don't know? Good luck

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