Actemra Advice and tapering.

[Leafsong66]

Hi wonderful Forum friends!

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!

[DorsetLady PMRGCAuk volunteer]

Actemra can make the Pred tapering easier for most, but it’s not the magic bullet that all doctors assume. Fingers crossed that it is for you.

[Leafsong66 in reply to DorsetLady]

Thank you dear Dorset Lady. We will have to wait and see. Hope you are doing well?

[DorsetLady PMRGCAuk volunteer in reply to Leafsong66]

Good, thank you...

[PMRpro Ambassador]

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!

[Leafsong66 in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Leafsong66]

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.

[Leafsong66 in reply to PMRpro]

Thank you for your considered reply. It really helps! Have a great day/night!

[LemonZest11 in reply to PMRpro]

Actually, we always knew I had LLV, but it was after 12 months happily on zero pred, extending the Actemra jabs from 3 to 4 weekly killed everything. Major relapse without any physical signs. It was through an MRI just as a reassurance, that the relapse was detected. Actemra stops working any, and I mean ANY, longer than 3 weekly at the absolute most.

[piglette]

Sounds like you have an ultra hopeful rheumy. If you have any problems, STOP REDUCING. Take it slowly but surely.

[Leafsong66 in reply to piglette]

Thanks piglette! ( by the way love your name! I’m a big fan of all things porcine!)

[piglette in reply to Leafsong66]

Are you also a friend of Poohbear?

[Leafsong66 in reply to piglette]

If you mean of 100 acre woods, yes.

[piglette in reply to Leafsong66]

You can share my pot of honey in that case!!

[Leafsong66 in reply to piglette]

That would be lovely!