Great information, and explained better than my Rheumatologist explained GCA to me. I was diagnosed with GCA & PR three years ago shortly after I turned 55 years old, This diagnosis was confirmed with a biopsy of my Temporal Artery, and with a PET CAT.. The Rheumatologist at the Dallas VA got it under control with a 60mg dosage of Prednisone.. Everything seemed to be getting better, but like you talk about is this video, she tapered me down from 60mg daily to 17.5 a day, then the GCA flared and it was a bad flare up, leaving me with constant soreness and aches, plus zero energy My Rheumatologist put me back at 60MG prednisone also added 15mg Methotrexate weekly, That got the GCA back under control, So after a a little over a month, she started stepping me down again, and when I hit around 15mg Prednisone, the GCA flared up and worse than any other time. So now, I am on 25mg Prednisone daily, 15mg Methotrexate weekly, AND now add TOCILIZUMAB 162mg Weekly.When does this ride end?? I am so tired of aches, soreness, stiffness, and zero energy. Is there ever an end to this? or is this what I get to look forward to for the next maybe 20 years??
We're you ever told of a life span? My dad found out he had this and we found out a few days ago and he was told that it can shorten your life and this has us all scared. Because its still very rare im struggling to find much about it
@@satyajitnayak5970 I'm fine, thanks for asking. Turned out what I had wasn't serious at all. Got the headaches from grinding my teeth in my sleep at night.
Please be advised if vision lost within 24 hours start treatment the patient still preserved light and it's getting strong however he cant see Is there any chance he get much less of his vision
What treatment is available if patient can't take prednisone
Try ACTEMRA…helps me but very expensive.
Great information, and explained better than my Rheumatologist explained GCA to me.
I was diagnosed with GCA & PR three years ago shortly after I turned 55 years old, This diagnosis was confirmed with a biopsy of my Temporal Artery, and with a PET CAT.. The Rheumatologist at the Dallas VA got it under control with a 60mg dosage of Prednisone.. Everything seemed to be getting better, but like you talk about is this video, she tapered me down from 60mg daily to 17.5 a day, then the GCA flared and it was a bad flare up, leaving me with constant soreness and aches, plus zero energy My Rheumatologist put me back at 60MG prednisone also added 15mg Methotrexate weekly, That got the GCA back under control, So after a a little over a month, she started stepping me down again, and when I hit around 15mg Prednisone, the GCA flared up and worse than any other time. So now, I am on 25mg Prednisone daily, 15mg Methotrexate weekly, AND now add TOCILIZUMAB 162mg Weekly.When does this ride end?? I am so tired of aches, soreness, stiffness, and zero energy. Is there ever an end to this? or is this what I get to look forward to for the next maybe 20 years??
Thanks
First diagnosed at 54 male - on 5mg of Prednisilone and Toczilumab
Only three flare ups in ten years 😊
We're you ever told of a life span?
My dad found out he had this and we found out a few days ago and he was told that it can shorten your life and this has us all scared. Because its still very rare im struggling to find much about it
@@Rob__James Do you have protruding veins on your temples?
@@Rob__James How are you now ?
@@deborahbray918 How your dad is now ?
@@satyajitnayak5970 I'm fine, thanks for asking. Turned out what I had wasn't serious at all. Got the headaches from grinding my teeth in my sleep at night.
Please be advised if vision lost within 24 hours start treatment the patient still preserved light and it's getting strong however he cant see Is there any chance he get much less of his vision
Is anyone here treating with a carnivore diet?
I have heard of a guy who had great success with that.
60 mg