Jaw locking while tapering for GCA

[Bummed24]

I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began tapering five mg. a week. I have had three Actemra infusions thus far. The second and third doses of Actemra mostly eliminated my headaches. I am currently taking 40 mg. of Prednisone. Advice?

[PMRpro Ambassador]

How long is it since the last Actemra infusion?

Though a locked jaw sounds more like coincidence than due to GCA - but who knows. The other symptoms are more concerning though.

[SheffieldJane]

I would seek medical advice as a matter of priority. The balance of your meds needs attention.

[DorsetLady PMRGCAuk volunteer]

As stated, you need medical advice… think you may have gone a bit too low on Pred too soon…as I said to somebody else yesterday. Weekly reductions [even 5mg] is too quick, you aren’t on each dose long enough to be sure current dose is sufficient before you drop down… even with Actemra.

Still early days…

[Sharitone]

Sounds a very fast reduction. Here, from 60mg to 30mg, it is usually 10mg every 4 weeks.

[Bummed24]

My third Actemra infusion was just last week and I felt pretty good last week. Alas, this morning my headaches and ear pain are returning, so I upped my dose to 45 from 40 mg.

My rheumatologist was quite concerned about my high doses, and encouraged the reduction by 5 mg every week after the second dose of Actemra was started.

At my appointment tomorrow, I' ll just take a deep breath and advocate instead for a ten mg reduction monthly since this isn't working. It took about 30 seconds for my jaw to unlock which never happened before. It's just a tad bit sore today, but the return of ear pain and headaches are a giveaway, I imagine.

I must have a massive amount of inflammation going on to have needed higher doses for so long, but I take heart in knowing DL and others survived just fine. This forum is a lifesaver. I am open to any other advice.

[DorsetLady PMRGCAuk volunteer in reply to Bummed24]

I must have a massive amount of inflammation going on to have needed higher doses for so long,

You need what you need… simple as that..,pity some doctors don’t get that… we aren’t all ‘perfect’ patients that follow the rule book as some would like us to!

[PMRpro Ambassador in reply to Bummed24]

Actemra takes time to work fully and only works on one part of the inflammation. If there is a lot of the other sorts - you need plenty of pred. I do wish doctors would READ the documentation on Actemra and THINK. The trials were done on the injections, the infusions aren't even approved for GCA but some insurance companies refuse to reimburse for the injections and they probably top up the occupied receptors ongoing. It is perfectly possible that the effect fades over the month between infusions.

[Bummed24 in reply to PMRpro]

Aha, that' s what I wondered.

[potterylady]

My jaw doesn't lock, but it's hard to open my mouth sometimes. I have to open it slowly and carefully.

[Bummed24 in reply to potterylady]

So sorry you need to deal with that. It's amazing...all these weird symptoms.