Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
There is currently another active discussion on giant cell arteritis here that you may want to read through:
I’m tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?
I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.
@charann2000 — do you have any questions about giant cell arteritis?
I wish I could tell you, don't worry, they will cover your pain. Wrong. I have RA and I can assure you, the only time I have no pain is when I am not going thru an episode
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Drs are terrified if they give drugs they may get into trouble. I see a pain clinic in about 3 weeks. I have waited over 3 months for appt.
Thanks for trying to get me into the correct discussion group on this matter….I greatly appreciate it!
Been treated for ten months. Started on 40 mg Prednisone which alleviated my symptoms 2-3 hours after first dose. Now down to only 10 mg and luckily no side effects.
I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. – 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.
I would be happy to tell you about my treatment and problems.
How long did you have your symptoms before being accurately diagnosed? Also, if I may ask how old are you? I am 69 almost 70. Did you experience a great deal of pain on both your temple and your eye on the same side which sometimes appears to go away but usually comes back?
I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.
Thank you for sharing this very valuable information with me, tinkerbell. I have had this for about two months now and actually thought it was related to my sinuses and I was going to a sinus specialist which took one whole month to get in to see him. Yesterday morning I saw him and began with mentioning the pain in the left temple and the left eye. He really honed in and listened to me closely….after doing a brief examination of my nose and several other questions which I answered pertaining to my sister having RA, he said I don't believe the temple situation is with your sinuses….it could be Temperol Arteritis. He said he would write an order for a CT Scan with contrast die of my head and the necessary bloodwork in order to make determination. He did not mention to me the possibility of going blind….I suppose he did not want to frighten me before a final diagnosis. Last night I went on Mayo.com and researched this and was horrified to hear how serious this could potentially be. The going permanently blind bothered me more than anything else and still does…I think I am in a panic mode right now. I am going tomorrow for all of the blood work and they are doing the CT Scan of the head on this Friday at noon. Right about now my temple is throbbing and I am afraid to go to sleep as I may wake up without vision. I wish that my Specialist would have stressed getting me into the diagnostic areas that same day, if possible. Right now, I feel like I am losing precious time! I hate the thought of worrying the entire weekend for the results and perhaps they will be able to hasten the process given my circumstances. If not, my sister has RA and perhaps I will ask her for some of her Prednisone to get me through the weekend until I can see a Neurologist. You can tell that I did not see this coming….I was blind-sided, pardon the ill pun! Once again, thank you for your input. I will let everyone know what is going on as soon as I get the test results!
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