How much credence is given to your bio markers ( ESR & CRP) in relation to how you’re feeling, when working out when to reduce doses?

[Siral]

Tapering Guidelines

[DorsetLady PMRGCAuk volunteer]

Some doctors place too much credence on them at times.....really the major key is whether you have any symptoms or not.

Early days, our decision (my GP and mine) whether to decrease or not was based on -

a.how I felt in myself, and

b, blood markers.

The problem with blood markers is they are apt to lag behind symptoms - and of course, some patient never have raised CRP or ESR readings.

So symptoms (or lack of them) always, corroborated by readings.

[Siral in reply to DorsetLady]

Thanks for your reply. I’ve felt good ever since I’ve started on the steroids so I don’t have a lot to compare it with. Time will tell I guess. 🤞

[PMRpro Ambassador]

Depends on the doctor - and as DL says, often far too much!!! You should stick at the starting dose until the ESR and CRP have fallen considerably and preferably are in normal range or close to - but for some people they never have raised values in the first place and then you also go by symptoms, which always trump blood markers which are notoriously unreliable and in some people don't fall as far as they'd like. Ongoing, you need to keep an eye on and a record of how your dose, activity, blood markers and symptoms fit together. Everyone is different, some people can mange a relatively big change in dose at one time (say 2.5mg) while others struggle with 1mg. You have to find out about YOUR PMR, response to pred and to reductions.

[Siral in reply to PMRpro]

Thanks, this makes sense. I just don’t have a lot to compare it with at this stage. I’m 13 weeks in and have, so far, only felt good since being on the steroids

[SnazzyD]

I’d say it is useful if you know your markers 1) have reflected your symptoms reliably in the past 2) They react quickly enough when your inflammation is rising and 3) They aren’t being influenced by some other unconnected issue in your body. People here have had both cases; they feel great but the numbers say they shouldn’t or they are in great pain but the numbers show only sunshine. There is also the group that have never had abnormal readings (according to the standard scale) ever. If faced with that familiar pain or stiffness the numbers can’t say it isn’t happening. However, some docs say it must be something else if the numbers are low even if it appears to be PMR in plain sight. If rising markers were heralding an impending increase in inflammation that you can’t feel yet, but you don’t know if it’s just a cold or that sore toe, time will tell. This is when small, slow reductions in dose are key. In any case many of us don’t get the luxury of frequent enough tests to see get to know our normal bio marker pattern pre and post a flare or symptomless reduction. Docs know that one iffy result needs to be checked again for certainty and a trend. Similarly if you have a normal one, how many times is it practical to check it to see if it’s staying the same if you feel ok? It’s a bit of a game isn’t it? So, really the same as what DL says but 10 times more words, which I’m not sure is a good thing 🙂

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Oh I don't know! Keeps you out of mischief!!😂🤣😂

[Siral in reply to SnazzyD]

Thanks for replying. I’m only 13 weeks in so haven’t got a lot to compare it with at this stage. The steroids have been great but my levels are now very low CRP2 from 179 and ESR 13 from >120. I’m currently on 9mg but due to reduce next week. Not quite sure what to expect.

[SnazzyD in reply to Siral]

Only 13 weeks from diagnosis? What explanation and time frame did the doc give you for this? How have your symptoms been?

[Siral in reply to SnazzyD]

I started on 15mg and had blood tests at 3 weeks (ESR 39 & CRP22) so reduced to 12.5mg. After 6 weeks I was (ESR36 & CRP7) so reduced to 10mg and at 10 weeks I was (ESR13 & CRP2) so reduced to 9mg.

I was told to keep reducing by 1mg every 4 weeks and have blood tests again in 3 months, which is February.

After reading people's stories on here, I'm concerned that this is not a slow enough taper. Dorset Lady suggested I drop to 8.5mg next week, rather than 8.

Since starting on the steroids I've had none of the symptoms that I experienced before I was diagnosed.

[SnazzyD in reply to Siral]

0.5mg is kinder on the body and if you stick to the doc’s plan, 0.5mg per 2 weeks (so still 1mg per month) is less of a handbrake turn. All you can do is see how you go and be vigilant because you are getting ever closer to that lowest dose that controls your symptoms and the point where your adrenal glands might or might not work well.

[Siral in reply to SnazzyD]

ok thanks, I didn't consider doing it 2 weekly but this makes sense.

[piglette]

My inflammation markers really do not give any idea of how I feel. My CRP and ESR have been over 100 off and on. Currently my CRP is 31 and my ESR 90. I was talking to my GP yesterday and he said my CRP was pretty low! I asked him why they were so high all the time and what was causing it. He did not have a clue why.

[Siral]

Thanks for replying. GPS can certainly be very frustrating at times 🥴On diagnosis, 13 weeks ago, my CRP was 179 & ESR >120 so the steroids (15mg) were a great relief & I've felt good, since starting them.

After 9 weeks (& down to 10mg) my CRP had dropped to 2 and ESR 13, so both, happily, back in range.

I’m due to reduce from 9mg next week but am nervous about what to expect as I get nearer to the 7mg mark because I haven’t felt any changes along the way to use as a guide.

[DorsetLady PMRGCAuk volunteer in reply to Siral]

You may be one of the lucky ones and not get any issues .......but below 10mg is usually more difficult than above.

Each reduction gets more in percentage terms - and recommendation is not more than 10% of current dose. So 1mg at 20mg it’s half that, at 10mg it’s spot on, below 10mg it’s higher.

That’s why we very often suggest only 0.5mg reduction at lower doses....but you’ll have to see how you go.

[Siral in reply to DorsetLady]

Yep, I’m just a bit nervous about it all ☺️

[DorsetLady PMRGCAuk volunteer in reply to Siral]

Understandably. I was fortunate in that I never had a problem with reducing - but GCA not PMR - and I think that’s sometimes easier when it comes to tapering. But my adrenals were a bit sluggish!

[PMRpro Ambassador in reply to Siral]

You have also to remember that increasing difficulty below 10mg is also in the context of the PMR. The lower you get, the nearer you are getting to the dose you are looking for (the lowest effective dose) and that also tends to get lower over time. If you get to 10mg pretty fast you may have more difficulty than someone who has taken a slower route - even taking into consideration that everyone is different. I think that is also why the Kirwan/Quick approach is successful in reducing the incidence of flares - they avoid the risks in the early stages of PMR simply by remaining at 10mg for a year.

[Siral in reply to PMRpro]

I know nothing about the Kirwin/Quick approach so will have to do some more research. I've just been following doctor's orders up until now

[PMRpro Ambassador in reply to Siral]

Sorry, should have added the link:

rcpe.ac.uk/sites/default/fi...

Dr Quick still uses it at Luton Hospital where she is a consultant specialising in GCA/PMR.

[Siral in reply to PMRpro]

thanks