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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: Jul 22 6:55pm | Replies (263)

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Profile picture for Wayne Ewing @wayneewing

About a year and a half behind you, so you are a pioneer for me! Hope you are doing well....
Almost made it to 88 with nary a dx or tx. Happy Birthday in February of this year included GCA dx and beginning Prednisone. tx. Weird experiences both. Next Monday April 28 I begin monthly Actemra infusion for a year as well as going on the fast track Prednisone taper. Will see what happens. Like you, I am active (e.g.,a staff writer for our 142 year-old hyper local independent weekly newspaper Wet Mountain Tribune, many physical projects at the ranch, walk everywhere I can, etc.), mediate twice daily, For 35 years or so, have used mineral and vitamin supplements as do you; mine include: B12, C (I know it's been discredited, but I still follow mega dosing promoted by Linus Pauling; one thing for sure--creates expensive urine!), CoQ12, Ginko Biloba, Lutein, a probiotic, and a men-over=50 one a day....Like you, waaaaaay cut back on sugar, lotsa fruits and veggies for decades, but unlike you, use gluten free here and there but also ordinary breads (some of which I bake) and pastas, and have maintained decades habit of a Pinot Noir wine in the evening....
Don't know what lies ahead....of course pain free while on Prednisone protocol, not sure what to expect as Actemra kicks in, prednisone kicks out....

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Replies to "About a year and a half behind you, so you are a pioneer for me! Hope..."

I was diagnosed with GCA and PMR 10 months ago. I started with 60 mg prednisone a day for 6 weeks, and I started taking weekly Actemra injections a month after being diagnosed. I didn't notice anything from the Actemra, other than occasionally being a little tired the day after the injections. I'm currently at 5 mg a day of prednisone and still taking the weekly Actemra injections. I haven't had any issues since starting treatment.

I've read that it can take anywhere from a couple of weeks to several months for the Actemra to take full effect.

Good luck with your treatment!

I hear that a fair number of GCA patients were previously in excellent
health as you were and I was, so the diagnosis is a shock and takes some
adjustments. I hope all goes well with you. It has helped me so much to
read about other people’s experiences and coping mechanisms.

I too admire Linus Pauling’s vitamin C work. I’m going now more to food
with vitamin C to get the co-factors.