Giant Cell Arteritis - Not really a question... just saying hello. I'm new to the group and I may?

Hi Steve, At last... I have made contact with someone who has this disease! Thank you. I am not a computer person and I think over half of what I wrote for my first post wasn't printed... I was diagnosed with GC in Dec 2012. In the fall of 2009 I started having tender places on my scalp. In March 2010 had MRI which showed nothing. In the fall of 2012 other things started happening. Soreness in temples, sore neck, ear aches, trouble swallowing. My family doctor suspected GC and started me on 60 mg Prednisone. Biopsy confirmed GC. Through the months other meds have been added... Methotrexate, folic acid, Vit D, Fosamax, Synthroid ( thyroid problems showed up several months ago). As you probably know, Prednisone takes care of the symptoms ... but the side effects of this drug are horrible. Thanks for the reply and any thoughts or comments are greatly appreciated. Susanne

Suzanne,
I also contacted a PHD that is one of the foremost researchers in the U.S. on vascular disease. There is promising research utilizing bee venom therapy for other vascular diseases but it does not apply to GC. He couldn't offer anything but "good luck and best wishes". Kinda scary, but nothing we can do. I am about to go off prednisone in two days. Its been a long, hard time. Yes, the prednisone is something else, eh? :) I also have a bad heart for 23 years. That doesn't help matters. I have been a very controlled diabetic for 5 years and after the initial swings with blood sugar, and the reductions of prednisone, I have had it back under control.
So, we wait... Aaaah, well... just got to plug along doing everyday things and hoping for more time.
I understand what you are going through. Best, Steve

Hi Suzanne, How are you doing with your GC, etc? Steve

Hi, you two! I am in the midst if my second flare of GCA, and my rheumatologist is getting me set up to start Actemra. How are you both doing? Any further flares? This time I lost some vision in one eye. My doc says I was lucky to just lose part of it. The more I learn, the less I like this mess we are in! I want to thank you for sharing your stories and being so encouraging. Sometimes I want to just run out into the woods and scream. But I guess I don't need to have the guys in white coats chasing me, so I don't. I will let you all know how this Actemra works out. I have heard good things about it, even though it comes with its own evils. I'm only 62 and want to see my twin grandsons graduate from something besides preschool. Hugs to you!

I have just found this site. 44 years ago, as a new therapist I saw a lady who was blind in one eye and the doctor explained about GCA. Somehow the information stuck and Nov.'14 I had very early symptoms, tired jaw eating a salad and very mild headache, and was immediately put on 40 mg Prednisone while the blood tests came back. In my country blood tests come back usually the same day to the doctor. After a bit of online reading I realised I had also got the associated Polymialgia Rheumatica. The weakness in hands , shoulders and feet improved almost within days of starting Prednisone; I had put all this down to getting older. Being on Prednisone is a real trial. Prednisone is hard work , so best wishes and its great to have others to share with. Best wishes Jill