ESR Readings

They used to accept anything up to 30 for people of our age - but that can still be raised for the person concerned - the range starts at 1, it is zero at birth and then rises, they thought throughout life but the higher readings in "healthy" subjects were probably an indication they had some undiagnosed inflammation. Mine is stuck in single figures, the highest it ever got to was 7 even though I couldn't move, it is usually 4.

Yes - at present that decrease is due to the pred, it is managing the inflammation which is due to an underlying autoimmune disorder that makes the immune system unable to recognise your body as "self" and it attacks the tissues by mistake. If the inflammation is reduced, the proteins that cause the increase in the sedimentation rate aren't produced. (Basically, ESR or sed rate is measured by putting whole blood into a long thin tube, standing it vertically and seeing how far the level of the top of the red cells falls in a hour, like sand sinking in a bucket of water. Lots of these proteins on the surface of the red blood cells makes them fall faster.)

Once your ESR has stopped falling and your symptoms (if you still have any) are stable, you should be starting to reduce in small steps to find the lowest amount of pred that still manages the daily dose of new inflammatory cytokines without a return of symptoms. 

I can't remember if you have said - did you start at 10mg? To get to 9mg in 2 months is very good and it took me months to get to and years (literally) to get below that level. However - I have no doubt your doctor will try to get you to reduce further at some point! If you do reduce, have an ESR done a few weeks later to see if it is still steady. One raised level isn't a reason to raise the dose of pred but if you check it a few times and it is creeping up you should go back to the last dose - that's why it is a good idea to stick at a dose for a few weeks to be sure. ESR can be raised just by a cold - it isn't just PMR. CRP is felt to be a better indicator but it will shoot up with a chest infection too.

Thank you, Eileen. I really needed to read your thorough response too. I am back up to 7.5 from 6 mgs of pred. Sed rate jumped from 3 to 27 in 3 weeks. Please keep helping us! Ann11195

In my jurisdiction there doesn't seem to be much interest in these inflammation levels, at least my doctor neglected to tell me how they had changed between June and October and I forgot to ask her.  She's a very nice, chatty person and we tend to go off track awfully quickly....  I have an appointment next week.  What should I be asking her, what tests should I be asking for - anything else beside the usual (inflammation, iron)?  Is Vitamin D test a good idea?  I've been taking D for many years although not always at the level now recommended (2000 IU).  BTW I am tentatively working down to 6.5 mg pred, third attempt so far going well, fingers crossed.

That sounds good.  Mine was 63 and in 4 weeks is down to 38 so hopefully will keep going down. But I am still on split 30mg.

Yes totally agree with Eileen,without her help I would not be at this stage now,you must follow the Slow Reduction method. At this moment in time I have been off Pred for 5 weeks. My original Sed was at 38 but now at 7.Which is good for me. I weaned myself down to half a Pred every other day. I only at this moment have problems with hands as in Carpel tunnel and Arthritis. The Pred was hiding this I fear.Hopefully I will continue as I am but if in any doubt I will ask for blood test to check Esr. Good luck

Ihave been on 15M for 5 years.. and for me.. if i drop by 5mg for a couple of days or even if I dont ...it can flare back up quite badly.. speak to your doctor or vascual team. xx