You might remember that my Rheumatologist was doubtful of my PMR diagnosis, and instead felt my symptoms were due to Covid and post Covid inflammatory syndrome. So he initiated a very swift taper from 20 down to 9 mg in a mater of a few weeks.
Sure enough my 3:30 PMR symptoms flared horribly and even my eyes became much more bloodshot and painful. I had the good sense to get a blood test after 3 days of this flare.
The very next day the Rheumi rang me with the news that my CRP was 80 ( was 48 at the first signs of PMR back in mid December). He admitted that it looks like I do indeed have PMR!
So new treatment plan is to commence Actemra injections weekly and to again taper swiftly down to 5 mg of Steroids.
Can I please ask if there’s any difference in tapering with Actemra?
This Rheumi is forever optimistic with my reactions to tapering ( my previous early posts attest to all sorts of unpleasant reactions ) .
Thank you so much for your input!
Written by
Leafsong66
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I'm on Actemra for PMR - it does allow you to taper faster but possibly NOT as fast as your rheumy thinks!! My guy is a world name in the field and very experienced in using it When I started I was on 19mg and had been for a few months, going up, not down! He was adamant I should wait at least a month, preferably 2 before starting to taper at all and should really take notice of my body as I did. The Actemra occupies the receptors that IL-6 has to attach to to exert its inflammatory effect. The chances are the first few injections won't take all the seats and then there is also a constant turnover of new receptors on cells. I did taper 1mg at a time after the first 3 or 4 weeks and it was fine. I think I paused a couple of times on the way down and below 10mg it was a bit wobbly. I didn't have a fixed schedule, if I felt good, I dropped the pred dose by 1mg. I also didn't necessarily use a slowed taper - if the first time didn't feel so good and I went back up, I slowed the next try. At 7mg I feel good, if I try 6mg I start to get bicep and forearm pain after 2 or 3 weeks. I tried to ride it out and tried 5mg and then I had the joys of adrenal insufficiency, weepy, couldn't cope with anything that didn't go quite right. So I went back to 7mg pred and tried spreading the intervals for the Actemra. I am now at every 2 weeks for the injections but the day before the next injection is due my wrists ache - but that COULD be an approaching change in the weather!! My rheumy did suggest trying every 12 days for the injections but at present it is fine. Having 2 weeks between injections reduces the risk of adverse effects and in the trials was only slightly less good than weekly.
There are probably at least 3 mechanisms which creat the inflammation in PMR, the same as GCA, Actemra only works on ONE, the IL-6 component, and if the others are part of your PMR, you continue to need some pred for that. About half of patients belong to each group - for half, Actemra is all you need, for the rest, your pred dose will be MUCH lower but not zero. In the GCA trials a common dose was 8-10mg, I need 7mg but biweekly Actemra - which s also good.
LemonZest11 did much the same and actually got off pred altogether and to injections every 3 or 4 weeks - until it was found she has LVV and had to go backwards. I think longer intervals between injections is possibly a bit risky until they can show there is no disease activity.
Has your rheumy considered investigating to be sure this is JUST PMR? You can have PMR symptoms due to LVV and it emerging that many PMR patients have subclinical LVV, i.e. it just looks like PMR and there are no signs of arterial involvement. It is unusual to have such a high CRP with "just" PMR so I think he should be looking. Hopefully it isn't but being sure would be nice!
Wow! You’ve given me a fair bit to think about. Thank you so much. I was checked for LVV back in 2023 when I was first diagnosed with GCA. I had MRI and CT scans for my aorta etc. All normal. However this time around my CRP is the marker that is significantly elevated despite being on steroids between 20 to 9 mg. Do you think I there is any merit in requesting a PET-CT anytime soon?
I don't know - since Prof Dasgupta didn't seem to think they were necessary but it is probably something that is up to the individual rheumy. 2023 is not 2025 - so I would try to discuss it with the rheumy. The level of the CRP is not always correlated with the inflammation and it COULD be due to something else - it is a non-specific marker.
The Actemra could well also deal with any LVV, or at least with some of it. The CRP will fall to normal levels after a few weeks on Actemra but that isn't because the disease is under control, just the inflammation it produces and the way Actemra works. Not the same thing at all. Then it depends if it is all due to IL-6 or something else as well.
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