ESR result

[DDKRM]

I've just had the result of an ESR test back and I'm wondering where to go now as my GP thinks the result is ok but I still have pain and stiffness. I had the blood test because I seemed to have a flare after reducing quite quickly from 15 to 10g of predisolone. I went back up to 13pred but still had pain and stiffness. This is my first experience of this problem after being diagnosed with pmrgca in April and reducing the meds successfully until now. So I'm not sure about quite what is happening. The ESR was 33. I know my previous results were higher than this. Not sure whereabouts on the level of inflammation this is. My instinct is to put myself back on 15pred as I was ok on this and then reduce more slowly. But I don't want to start yoyoing. And after reading many of the posts I'm aware there might be other things going on. My next appointment with my rheumy is late July. I'm going to try the local Bowen practioner too. Any advice out there? Any comments appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi,

I would say, follow your instincts. You know your body better that anyone else! If you feel okay at 15mg then stay on that for a couple of weeks maybe. Then try reducing again. What the doctors recommend is theoretical anyway, one size does not fit all!

If you have read any of my replies, you know I'm an advocate of slowly, slowly. What's the point of rushing if all you do is go up and down. That scenario just makes you more depressed. You feel much happier if you can keep decreasing (without problems), much better for your body, and morale, to decrease by 1/2mg at a time than keep yo-yoing.

Once you've been on steroids for more than three or four weeks there is no point is trying to get off them quickly anyway, so go with the floŵ!

[piglette]

I agree with Dorset Lady, I think doctors go for gold on reduction. By reducing too fast just means you will need to increase again which means you have unecessary pain and you don't go any faster than if you had taken it slowly. Did you have a CRP blood test too? It is thought that gives a better feel than ESR.

Also are you taking vit D and calcium to counteract the pred? Have you been offered a Dexascan?

[DDKRM in reply to piglette]

Thanks dorsetlady and piglette. I haven't had a crp blood test for a while, was just offered the esr. The crp went down very quickly when I was first diagnosed. And wasn't sure of the, if any significance of the 33 result. As you say it's really horses for courses, with blood tests. Yes I've had a dexa scan, with an osteopenia result. And take calcium and vitamin d and just started Aacid, which I'm a bit doubtful about. Taking painkillers for the pains at the moment but I'm going to increase the pred dose from tomorrow. Hope going back to 15, which was ok before will help this pain. I was fine from 60 to 15. Rheumy said go from 15 to 10 and then go slowly, ie 1pred month by month. rather too fast a reduction from 15 it seems. i was diagnosed and treated very swiftly by gp and hospital and given good follow up so far. But it looks like the management is a bit off now.

[PMRpro Ambassador in reply to DDKRM]

For goodness sake - top experts say no reduction should be more than 10% of the current dose. that was 33%! If you reduce too fast you can have steroid withdrawal pain - I KNOW he uses that sort of reduction in other pred patients but PMR is different, even if he doesn't think so.

Back to 15mg and then reduce slowly. One group would have done 20, 17.5, 15, 12.5, 10 with 6 weeks at each of the doses to 10mg. Even in GCA they then leave the patient at 10mg for a year.

But I'm confused - diagnosed in April, started at 60mg and now already down to 15mg - I assume then it is PMR you have but what on earth was he using 60mg for? That is GCA dosage. PMR should start at about 20mg maximum.