GCA patient with new PMRish symptoms….

[Aoakleymoore]

Good morning, I’m a first time poster to this forum. I’m 53, diagnosed in May 2023 with GCA after a severe, sudden headache and intense jaw pain. I started on 60 mg Pred and have tapered to 1 mg per day currently. I am doing Actemra injections weekly ans well. Over the last couple of months I’ve had extremely puffy and swollen hands overnight which improve over a few hours. My arms also ache overnight and make it difficult to sleep in my usual way (arm under my head). I have random numbness and tingling in the arms also, occasionally while driving, typing, etc. My neurologist does not think it’s PMR because my inflammatory markers have been low and stable over months. My GP thinks carpal tunnel and I have an appointment in September. Any thoughts or recommendations would be welcome. Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Getting to 1mg of Pred within 13/14 months is quick - even with Actemra…

As for inflammatory markers being low, that’s the effect of the Actemra - in fact pretty meaningless [PMRpro will explain in more detail in due course] - not the fact you don’t have a relapse of GCA nor PMR.

The hand issue does sound like carpel tunnel - and that is very often associated with PMR - so I’d go with GP on that.

You may well have had PMR all along, but in neither doses it was fully controlled, and since you have reduced it has become more noticeable.

Why not ask your GP for an increase in Pred for a couple of weeks and see if that helps.

Your normal sleeping position is probably not helpful if it is PMR… but I realise that’s not easy to change.. and the fact you have some issues with arms when driving needs addressing.

[Aoakleymoore in reply to DorsetLady]

I will talk to my GP and neuro about increasing Pred temporarily. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Aoakleymoore]

Good -hope it helps and let us know please.

[PMRpro Ambassador]

Hi and welcome!

Well OF COURSE your inflammatory markers have been low for months if you are on Actemra - that is how it works, it prevents the IL-6 cytokine attaching to the receptors it needs to exert its influence and so it is unable to create the inflammation that raises those markers. It is made abundantly clear in the literature that the usual inflammatory markers cannot be relied on in a patient on Actemra and symptoms are predominant in monitoring although some doctors use serum calprotectin as a substitute but I don't know much about the details or correlation.

The other point is that GCA has at least 2 other mechanisms which create inflammation and they don't respond to Actemra. If YOUR GCA has either of them present you will need some pred to deal with that and only about half of patients are able to get entirely off pred. Did these symptoms start at a higher dose of pred or have you been lucky in getting to 1mg before it happened?

Are particular fingures affected? Have you tried using a wrist splint to see if that relieves the overnight symptoms? Have you tried increasing the pred again to see if it helps?

[Aoakleymoore in reply to PMRpro]

Thank you for your guidance. I was sold on Actemra being a “steroid sparer” which meant ( in my head) the ability to taper more quickly than others not using it. The symptoms really started at 2 mg Pred. All fingers seem to be affected. I don’t dare wear rings to bed anymore. A wrist splint is a good idea. I will also increase Pred, go up to 5 or 6 mg for a week to see if I get some relief.

I really, really appreciate this forum and I’ve learned so much from you all.

[PMRpro Ambassador in reply to Aoakleymoore]

I suspect - and hope - that at 2mg there was enough pred to keep the inflammation in the carpal tunnel down enough for there to be no symptoms. Carpal tunnel is not uncommon alongside PMR so I would try the splint and get the GP investigating that. And work from there.

I'm beginning to think that doctors should have to past a test about Actemra before being allowed to prescribe it!!!!! I read the clinical trial documentation and the limitations are obvious if you know anything about the field. It is a brilliant drug - just not quite as good in some respects as the uninitiated think!

[AtopicGuy]

Did you originally consult with a neurologist for something else, or only recently, when the "numbness and tingling in the arms" started? One of the rarest (and most uncertain) side effects of Actemra is demyelination, which is an autoimmune neurological condition. It could be suppressed by prednisone, but then re-emerge as the dose was tapered.

[Aoakleymoore]

I meant rheumy, not neurologist, slip of the tongue! I appreciate the other additional info of the other condition. I’ll do a little research.