Adjusting to life with temporal arteritis

Go to a vascular doctor. I have PMR and some GCA symptoms. They will not do an ultrasound or temporal biopsy because I am on prednisone so the tests would be negative. The doctor took me seriously and is testing for other vein problems that I probably have. They think I am ok for now because of the prednisone and baby aspirin.

Yes. It can be around for many years.

A very helpful website is healthunlocked.com.

Its been 2 months since Rheumatologist Told me that's what he thought I had I just had my bilateral biopsies today

I just had twilight sleep doing mine

Yes I had the biopsy and was told out of all he does most are negative due to most people being put on steroids so im sure mine will be negative since if been on steroids...they really have bad side effects for me ..its been 7 months of low grade fevers temple crushing pain bad head pain jaw pain my neck just took so many drs until I went to Rheumatologist and he diagnosed me with RA and temporal artery arthritis

My dr. Wanted the test he said he was scared for me ekk ok so did biopsy and I hope its not negative been on steroids for 1 month now

Yes I went to a vascular dr he did the surgery but did tell me prior that most are negative due to steroids being used ..im sure I have this has all the signs my head still feels like it could bust lots of pain have RA also

Being treated for PMR going on two years. Taper down to zero prednisone only to be hit with symptoms that were severe enough to go back up to 20 mg daily. Had the usual PMR symptoms but this time I had symptoms above the shoulders, head, pain, jaw, pain, tingling of the scalp. My rheumatologist ignored the above the shoulder symptoms and continued me on a 20 mg prednisone dose. The headaches i got so bad I demanded something be done. He had dismissed the above the shoulder symptoms until they got so bad, he sent me for a temporal biopsy. I have been on prednisone 20 mg for quite some time the biopsy came back positive for Temporel arteritis. immediately put on 60 mg of prednisone daily. It took a good three weeks to relieve the symptoms down to 50 now feeling pretty well. Still have some issues, but my rheumatologist had dismissed all the above the shoulder symptoms even had blurry vision, so I had to demand something to be done again advocate for yourself because I could’ve gone blind but I didn’t. In my research of this disease, GCA I found that any time symptoms above the shoulders and you have PMI automatically suspect GCA and start treating accordingly. Anyways, bottom line here is I was on a 20 mg dose of prednisone and my biopsy did come back positive. do you research know the symptoms because your doctor could dismiss them you really need to advocate for yourself and I am in the process of finding another doctor because there’s just no interest in treating me. It seems. I started eating a healthy diet. Non-inflammatory as best. I can trying to walk to a little bit of exercise. Try to regain what I’ve lost so feeling a little better. Hope this helps somebody.

Hello @jeep2004 and @terri1958, Welcome to Connect. Glad to see that you found this discussion. Thanks for sharing your experience with temporal arteritis (GCA). I thought you might find the following discussions helpful also:
-- Educational Conferences for PMR/GCA?: https://connect.mayoclinic.org/discussion/educational-conference/
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/