don't understand,

[Harrigan]

Ive had PMR for 3 years, got down to 3mg steriod for ages, then had problems, so had to go up to 5mg, which i was on for once again ages, Doctor said time to reduced once again so had blood test and wow doctor said ive gone fro 5.5 to 55 so now on 10mg, what are these numbers , and why do they go up and down i do understand that they should be at the lowest about 4, but what are they just numbers to me, would like to understand a bit more,

[DorsetLady PMRGCAuk volunteer]

If doctor is talking about ESR in particular they can fluctuate for all sorts of reasons, not just your PMR.. from anything to a cold, to a stubbed toe, to an operation - just shows excess inflammation in body, but not what caused it.

But what problems did you have, that may well be part of the reason.. and did they improve with increase?

Your inflammation markers may just be slow in going back down - always assuming you have got the inflammation back under control.

Might be worth asking for a retest in a couple of weeks just to make sure it wasn't a blip.. that can happen.

[Harrigan in reply to DorsetLady]

Thank you for your reply, i did have a cold, , so does that mean every time i'am ill i will have to take more Steriod, so does this go on forever or will it just all sort it self out seems like iam up and down with the Steriods ,

[DorsetLady PMRGCAuk volunteer in reply to Harrigan]

No it doesn’t mean every time you have a cold you will need to increase steroids - unless of course it causes a flare of your PMR..which is unlikely.

As I said the tests don’t differentiate what has caused the increased inflammation-and it increases naturally all the time under normal circumstances when the body needs to health itself no matter whether it’s a cut finger or a cold or some much more serious.

But until you go on steroids and it get inflammation checked regularly you don’t think about it.

Mine went high after 2 replacement surgeries and 24hr flu type virus long after my GCA had gone into remission -but soon returned to normal (after a bit of a panic at the GPs)

As both PMRpro and I have said just get it rechecked -hopefully it will have gone in the right direction.

And what do you mean in particular when you say I’m up and down with steroids?

[PMRpro Ambassador]

I imagine it is the ESR test, erythrocyte sedimentation rate, the rate at which red blood cells settle to the bottom of a vertical tube. It is influenced by proteins on the outside of the red blood cells which are made in the liver in response to inflammation or infection in the body. But it can be ANY inflammation, not just PMR so a cold or an injury will send it up.

When the doctor did the last blood test did you have any symptoms? A single raised blood marker shouldn't result in a kneejerk increase in the pred dose as other things may be causing it to go up. The best thing is to check the blood a week or 10 days later to see if there is a rising trend.

[tangocharlie in reply to PMRpro]

Sounds more like CRP to me if they are saying 5 ish is normal? Harrigan can you check and let us know which blood test you had?

[Koalajane]

I have realised that it is symptoms that are important, so I don’t even ask for a blood test now.

[tangocharlie in reply to Koalajane]

Mine mirror each other. When I'm feeling really rough eg in a flare the CRP is high, and when things are under control it's high. It's got to the stage where I can usually accurately predict what my result will be. So instead of listening to me the doctors now say don't go by blood tests .... I could scream sometimes