GCA with Lupus

[Gluten]

I was first diagnosed with PMR first about 10 years ago. That was quickly followed by diagnosis of lupus. After complaining of headache in right temple area for 3 years my rheumatologist had a biopsy done and I had GCA. Quickly put on prednisone and was on 6o mg for several weeks. Developed prednisone induced lower leg neuropathy and was quickly taken down to around 10-20 mg. Nothing was working until I started the Actemra shots once a week. Seemed to be going great. Then diagnosed with a sarcoma and rheumatologist took me off Actemra and left me on minimum prednisone. After treatment of radiation and three surgeries I was back on Actemra. Once a week and now down to 4 mg of prednisone as well. However now experiencing headaches about once a week. Rheumatologist seems unsure of what to do. For now going up on prednisone to 20 mg when headache begins, but unsure how long to stay there and how quickly to come down? Headaches usually last 1 to 1/1/2 days.

This is complicated since I also have TMJ and every 6 months I have an MRI of my leg and a CT of my chest TMJ also causes headaches. So I have a dilemma.

suggestions?

[PMRpro Ambassador]

You have been through it haven't you!!

My first comment is that Actemra only gets half of patients to zero - GCA inflammation can be caused by at least 3 different mechanisms, Actemra only deals with one of them, biologics are VERY specific, so the other two, if present, require pred to manage the inflammation. Too many doctors seem totally oblivious of that fact.

At what dose did you NOT have these headaches or don't you know? Does the headache go on the 20mg? Have you tried the more usual "How to deal with a flare" of adding 5mg to the dose where it happens?

But if they are once a week and you are on injections - amongst the common Actemra side effects is HEADACHE. Has he considered that?