Who has GCA, Giant Cell Arteritis?

jcl75
My GSA developed as a reaction to IV Reclast. About 3-4 days after the infusion I developed flu like symptoms. I was to this might occur with resolution in a day or 2. I then developed pain in my jaw with the inability to fully open my mouth, bony pain in my lower jaw, pain behind the eyes, swelling around the eyes, facial swelling, distention of my temporal veins and loss of eyesight in the upper right eye. I have been on Prednisone 40 mg for 2 months and will wean down after I start Tyenne. This is a new diagnosis for me. These symptoms have been reported to the FDA and the company as well. There is some association between Reclast and GCA.

@jcl75
Just out of the Mayo Clinic after 2 weeks in an autoimmune firestorm with GCA taking center stage!! High doses of IV steroids helped but couldn’t taper without sliding back into symptoms flaring up until the Rheumatologist said let’s try taper with Tyenne or Actemra IV. So grateful it worked! I was able to get tapered down enough to take oral prednisone & symptoms were so much better That GCA headache is awful! I cried in relief when after Tyenne it was almost gone for the first time in 2 months. I wish you good luck and good results with the Tyenne!

Diagnosed with GCA in March 2025, (male, 88), while on a Prednisone tx 60 mg for suspected GCA, immediately went into monthly Actor infusions 400mg with rapid tapering of Prednisone (17 weeks), now after a year of monthly infusions, have begun a year of Actemra infusions every eight weeks, Have had no symptoms since infusions began, live life fully, very minor side effects (blurry vision being addressed by retina specialist and injections), remain employed as a journalist.
I wish you well in finding a tx path that relieves you with similar success.
Peace,
Wayne

I have GCA was on prednisone didn’t work they changed it to methyl prednisone was on that for two years weaned off that medication twice now on Actemra injectable once a week been on this for 18 months now. I had severe headaches and was seeing black shadows floating around my eyesight when reading or watching tv and pain in my right temple. My biopsy was done at the eye clinic at Mass General Hospital in Boston. It was undetermined because there is a small window when biopsy can be done because I went to MGH for second opinion I was on the last two days of that window.

@jcl75 I am sorry you have had this issue as a result of Reclast. Each time we are willing to accept new treatment methods we take a leap of faith, from the clifftop of our body's confusing actions. This requires an act of bravery we sometimes aren't able to define.
My heart goes out to you!
I am 2 months into my GCA diagnosis, awaiting infusion of Tyenne (or whichever drug my Rheumatologist decides is best) while beginning a very slow taper of prednisone.
Learning to live every day as well as I hope to see further improvement. Last year on Rituxumab infusions for Warm Autoimmune Hemolytic anemia, my side effects challenged me. Yet the treatment worked for which I was grateful. Will learn my current status on this next week...
Wishing you my best today, stay hopeful!

Thx, hugs are always 👍