1. < Polymyalgia Rheumatica (PMR)
Profile picture for MLeeB

Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for Mike
Mike | @dadcue | Apr 22 11:47am
In reply to @jeff97 "I was diagnosed with GCA and PMR 10 months ago. I started with 60 mg prednisone..." + (show)
Profile picture for jeff97 @jeff97

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!

Jump to this post

Depends if you define "full effect" as being able to taper off prednisone. I don't think that is the best definition when we are on Actemra.

People sometimes think remission is being able to taper off prednisone. However, remission might be better defined when we are on Actemra as being without symptoms and having no relapses when the Prednisone dose is approximately 5 mg or less. At lower doses of prednisone, being able to taper off prednisone is dependent on how fast the adrenals resume their production of cortisol to offset the reduction in the Prednisone dose.

In my case, it took me 3 months to be able to stay on 3 mg of prednisone for an extended period of time without a relapse. My cortisol level wasn't adequate enough for me to taper off Prednisone for another 6 months while I stayed on 3 mg. Actemra "facilitated" the process of me getting off prednisone because it prevented a relapse and Actemra didn't suppress my adrenal function.

REPLY
Profile picture for saraanne
saraanne | @saraanne | Apr 24 10:00am
In reply to @wayneewing "About a year and a half behind you, so you are a pioneer for me! Hope..." + (show)
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....

Jump to this post

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.

REPLY
Profile picture for maddboat02
maddboat02 | @maddboat02 | Jul 22 6:55pm
In reply to @crhp194 "I have been diagnosed via a biopsy with temporal arteritis but have not yet started treatment...." + (show)
Profile picture for crhp194 @crhp194

I have been diagnosed via a biopsy with temporal arteritis but have not yet started treatment. I don't have any of the symptoms so I suspect it was found early though I did have open heart surgery May 10, 2016 for aneurysm repair and arch replacement. I am 72 and ready for cataract surgery plus extensive dental work. My question-does taking prednisone preclude doing these procedures?

Jump to this post

I am 82 years old. I was diagnosed with GCA approx 5 years ago after 5 months of having numerous tests. My SED rate at the time was 194. I did not have text book symptoms; ie jaw pain, severe headaches, etc. I did have biopsies on both sides of temporal regions with positive results. I was placed on high dose Pred. which I eventually suffered from toxicity - resulting in Parkinson-like symptoms. My Rheumatologist then put me on some sort of chemo drug (don’t know name) monthly for the next 4+ years. I did well on the regimen and inflammation #’s returned to normal. I was off medication for 1+ years but had routine blood work which was normal. November 2024 I had numerous artery blockages and experience a stroke two times in a week. I also had another stroke in February 2025 afterwards receiving 14 days of in-house physical therapy. GCA is inflammation of blood vessels that eventually cause damage to the vessels in the brain. I am on Methotrexate 4 tablets once weekly to control the GCA. Of course, Metho. drug can do harm to the liver. I started on 6 pills weekly and lab work showed it was affecting my liver; hence, 4 pills weekly now.
I hope my story helps someone suffering from what seems like a very little known illness.
After reading people suffering from GMC

REPLY
View MoreView Less
Please sign in or register to post a reply.