Article on blood markers & PMR/GCA

[Gilmor]

Hello,

Came across this article today which I thought might be of interest. Being on Actemra I have reading up on articles that focus on alternative blood markers instead of CRP

frontiersin.org/articles/10...

[PMRpro Ambassador]

As I have said all along, ESR has its place:

"Interestingly, erythrocyte sedimentation rate (ESR) outperformed CRP as marker for relapses in GCA,

[Kafkaontheshore]

very interesting thank you. Good to see there may be other markers. I have had my one year Actemra allowance in the UK and am now on biosimilars, Sarilumab and just yesterday had infusion of Rituximab. I have large vessel vasculitis. Good luck to you on Actemra and in your studies. It is good there is so much open access to papers these days.

[Gilmor in reply to Kafkaontheshore]

Thanks and likewise

Also saw a recent report on Sarulimab in Nature that looked interesting, might be worth checking out. Did not save that link though

[Plains in reply to Kafkaontheshore]

Can I ask why they only approve Actemera for one year in the UK? Is it do to the cost?

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Not entirely -but the initial trial only lasted for 12 months, so there is no information/evidence of its effectiveness after that period.

There a few patients whose period was for a further 6 months during Covid.

[Plains in reply to DorsetLady]

Thank you, I have no body pain on actemera. The only pain I get is in my head with GCA. I am now taking 9 mg of Predisone. Do you think I should try to go off Actemera to see what happens? I hate to think I am taking something that may not be doing anything for me. I have been on it for 14 months.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Hi

To be honest I have no personal experience of Actemra - it hadn't been authorised for use in UK when I had GCA... but I do know it isn't the miracle cure for everyone.

Have the head pains returned since you got to a certain level of Pred? If so, then maybe you need to up it a little and see if they go - but whether you come off actemra or not is really a decision that must be taken between you and your rheumy. But I do agree, if you don't think it's working for you, then why take it.. or at least give it a few months break and see what happens.

[PMRpro Ambassador in reply to Plains]

Actemra works to get about half of patients entirely off pred. This is because the inflammation in GCA is due to up to 3 different mechanisms - Actemra only deals with one of those mechanisms because biologic drugs are extremely specific. It is the main one so it works to some extent for most patients and if you stop taking it then the symptoms will come back if the underlying autoimmune disorder is still active even of your GCA is due to the sort Actemra targets. I would say it is definitely doing something - but there is something else as well for which you need pred.

[Plains in reply to PMRpro]

Thank you, I go to my doctor next week it will be interesting to hear his take on things. He is a new doctor since my other one retired.

[Sharitone in reply to Plains]

I have been on actemra for 2 yrs, and the focus for me is reducing the pred, which has known down sides. If you still need mg pred, that suggest there is still active disease.

[Plains in reply to Sharitone]

How much prednisone are you on? Do you have GCA?

[Sharitone in reply to Plains]

Currently 3.75mg, third attempt to reduce! Yes, Pmr, GCA/LVV.

At first, consultant wanted me to reduce to 0mg while still on Actemra. I did this, but symptoms built up again. I think the rheumies are much more bothered about getting off the pred than ending the Actemra.

[Plains]

thank you very interesting!