Advice on reduction whilst ESR higher

[Jo1947]

Hi, my last two blood tests showed ESR at 25 and I would like to try a reduction from 4mg to 3-1/2mg should I wait until ESR is lower? Advice appreciated, thank you

[SnazzyD]

I guess the question is how have you been feeling and how do you feel now?

[Jo1947 in reply to SnazzyD]

Hi Snazzy, good questions, this morning I don’t feel full of energy and have a bit of pain in my hips but on another day I feel ok!

[SnazzyD in reply to Jo1947]

Do you keep an activity diary? It is worth watching what one does a day or two before a day of not feeling so good in the muscle department. Do you normally feel full of energy or do you feel you ought to be by now?

[MrsNails]

Have you based your other reductions on the Numbers or how you feel?

How often do you have your bloods done?

MrsN

[DorsetLady PMRGCAuk volunteer]

Really depends on what your usual ESR readings are - if you have records & if you have any symptoms.

As we know ESR reading just show inflammation levels - which can be raised for a variety of reasons - not just PMR.

However if month on month they rise, then you need to consider there may be an issue.

If you have good days and bad days - then it might suggest you are on the brink of enough /not enough Pred.

So to that end I wouldn’t taper until I was 100% sure all okay.

[PMRpro Ambassador]

What was your ESR previously? The actual figure is immaterial - it it how it relates to YOUR personal normal level. If it has been lower and is rising - you shouldn't be reducing.

[Jo1947 in reply to PMRpro]

Reply to everyone who has sent me messages, I have bloods done approx every 6 months last one done beginning of October both two last readings 25. At. The beginning of the year I was on 2-1/2 mg but had a flare and had to go up to 6mg, I’m now down to 4mg and good days more often than bad. Do I start reduction to 3-1/2. or stay where I am through the coming months with this 25 ESR reading. Thanks everone

[PMRpro Ambassador in reply to Jo1947]

Others won't necessarily get notified of this question since you addressed it to me. More will see it if you reply to yourself.

It is up to you - if you feel really well then it is fair to try a drop - your ESR obviously tends to run high. But if you flared before at 2.5 - that may well be a sign you are getting close to "your" dose. I would want to be able to says a lot more good days than bad ones. But that is me.

[tangocharlie]

That sounds quite high to me, when my CRP goes over 20 it's usually a case of needing more steroids not less. When things are under control and I'm feeling well the reading drops below 10 but that's me and everyone is different. As PMRPro and others say all the time, you are not aiming relentlessly to reduce to 0 but to find the lowest dose that still manages symptoms and keeps you functioning. The key thing is to find that balance, which can change often.

[Jo1947]

Thanks everyone for replying, as I had previously got to 2-1/2: had a flare and went to 6mg, now down to 4mg looking at all the advice, I think I will stay at 4mg until my next BT and see if inflammation has come down, then try for 3-1/2 mg

[piglette]

As the others say the important thing is how do you feel? If you are not sure if you are up to reducing at the moment Don’t, otherwise carry on. If I had taken notice of my ESR I would never have reduced as I have never been as low as 25.

[Jo1947 in reply to piglette]

Thanks Piglette, everyone’s advice has been great and I think youve proved, without looking at the numbers, if you feel good, reduce slowly, slowly

[piglette in reply to Jo1947]

Slowly, slowly is good advice. Some people can reduce by pretty large amounts, but I definitely can’t.

[remission]

My doctor said she doesn't focus entirely on the numbers but rather how I am feeling, which has been great for me, because at one point I was ESR 62 and I kept reducng because I felt good, took several months for the ESR to come down to 9 and now I am at 3 mg pred...sometimes I have discovered the ESR is due to stress and who doesn't have that if you have PMR

[Jo1947 in reply to remission]

That’s interesting Remission, using that maxim, I don’t feel 100% so will leave reduction for a while. I do have some family stress at the moment as I’m sure lots of others have too, thanks