I Have Temporal Arteritis Too

I started out with jaw pain 16 months ago at age 70 and was diagnosed when my eyesight became fuzzy. The next day I woke up with blindness in one eye (All of lower half and part of outside peripheral vision). I was put on 1000mg of prednisone and have been trying to work my way off for 15 months. The fatigue is very depressing and I can't seem to get below 12mg without terrible fatigue and some symptoms coming back like shaking. I can't read for more than 15 min. I want desperately to get off this drug. I have a slight fever and my white count is now high at 17. sed rate has been generally not too bad. I am taking Forteo at $900/month to offset the osteoporosis caused by prednisone and it  has not worsened so far. I need to talk to others who have this disease and feel so much like the lady who posted her story March 8th,2010. i don't know how we can contact each other or find a local support group.
Any advise would be appreciated.
Tired in Texas
tiredintexas tiredintexas
70+
5 Responses Jul 19, 2010

Yes, tiredintexas, we may have a support group as we are part of the EP community!

Hello to you tiredintexas, I am reading your story and decided to post this reply immediately after. Let's see if we can ex-change our journey experiences on this matter!
I am glad to be able to get in touch with someone with the same health condition as mine.

My wife lost vision in her left eye in March 2012 (age 67) and was immediately diagnosed wth GCA. She started off on 60 mg of prednisone daily and is currenty down to 17.5 daily. She has great mental strength to fight off this disease but is becoming extremely frustrated with feeling tired and being light headed. She bruses easily and from time to time rips her skin. As you are aware prednisone is a highly toxic, disgusting and very necessary medication that takes its toll on the body. Would like to communicate with individuals who also suffer from this ailment and would like to hear about positive results only.

As I can see all the replies on Temporal Arthritis are from long time ago. I am posting anyway. Me too, I have Temporal Arthritis and I was diagnosed seven months ago. We may get in touch with people who have this same health condition through EP site. We may ex-change our experiences on this same health journey!

I recently had a biopsy on my artery near my temple, three weeks ago, it has made my eyelid drop a bit and feels a bit numb, maybe a bit of nerve damage, I was very nervous before the biopsy and my blood pressure went sky high so no they are trying to manage the blood pressure as well as the arteritis which the biopsy confirmed I have my right eye has a brown spot in the middle which the doc said won't get better, I'm hoping it will in time, does anyone have any remedys to give me thanx

The doctors suspect my mom has giant cell arteritis and would like to biopsy to confirm diagnosis.<br />
My mom is very worried about any side effects of biopsy and would like to know what to expect from<br />
someone who has experienced it. Would you or anyone who can share the biopsy experience, I'm <br />
worried that she will do nothing and risk her vision.