Forgive me.after reading all the questions an answers I get the feeling that some members are still in pain

Despite taking medication, why is this I thought that the steroids was meant to reduce inflammation an thus you are pain free apart from some discomfort but bearable.forgive me I am new to all this

[steph1]

Hi I'm quite new to all this aswell mind hasn't been confirmed yet , I'm on 40 mg of steroids , had the biopsy which they think will come back negative due to having been on steroid for about one month before biopsy . Sorry I've not been a lot of help Steph

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Thanks for replying. Hope it goes well for you ,an you get all the answers to all your questions.as I too am asking lots of question

[Celtic PMRGCAuk volunteer]

Hi akumal - a few sufferers do manage to have a pain-free journey down through the steroid reductions but most of us feel some early morning discomfort and stiffness in the early days, probably because steroids are not actually curing the illness but merely controlling the underlying inflammation. Everyone is different and I hope you will be one of the lucky ones and remain relatively pain-free on the treatment.

[Pipistrelle]

Agree with Celtic -- except when I started on 15mg I always had a lot of morning stiffness where I couldn't schedule much to do in the mornings, for the first year of having PMR. That has improved considerably now so I believe the condition is slowly going. However though most have less pain and stiffness I don;t think anyone gets back to a 'normal' pre-PMR/GCA level of activity etc on steroids. Exercise is important as I think is finding ways to have as much of your normal life as possible, but I needed people to help me with suitcases, needed lifts rather than lots of stairs, had to sit up completely to be able to roll over to my other side in bed -- lots of compromises.

Doctors including rheumatologists seem to have the impression that we take steroids and then should be pain free but I have hardly come across anyone where this is the case! It tends to be a balancing act -- enough steroids to manage the condition but as low a dose as possible, without increasing risking a flare.

I strongly believe exercise helps recovery; maybe it helps with circulation...

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Initially I was on 15mg for 2 months until the blood tests returned to normal. There was an initial significant improvement on steroids followed by a gradual reduction in the pain and the stiffness went completely. Over a year I have gradually reduced from 15mg to 4.5mg. I have found that the discomfort has persisted throughout although it is reducing very very slowly. I have found that I temporarily get more pain when I first reduce the dose but this goes after a few days or sometimes after as long as 2 weeks. I have managed to cope without painkillers. Tiredness is a problem and my life is much more limited than it was however my energy is very gradually returning and I can do a lot more than a year ago. Hope my experience is helpful.

I believe that the right combination of gentle exercise and rest helps.