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Temporal Arteritis - sounds like Chinese Cuisine

royce21657 Message
29 Jul 2011, 04:05 AM

About 4 weeks ago, my PCP told me he thinks he figured out my headache - Temporal Arteritis. I am very relieved to know what is wrong with me and that it is treatable. However, it is taking forever to see a neurologist (first available appointment is 8/18/2011 and I made it three weeks ago). I called Johns Hopkins Vasculitis Center but can't see a doctor there until September. My PCP started me out on 60mg Prednisone but I am now down to 45mg for the next 4 weeks. At 60mg, I felt great after a few days. At 50mg, I felt really good with just a mild headache and mild joint pain now and again. At 45mg, my headache is worse, I have horrible joint pain in my hands, hips, neck and anckles, and stiff neck and shoulders. Also, the numbness in my right hand and toes is worse. Last week, I started experiencing extreme dry mouth (feels like my mouth and bottom lip is on fire) and sores inside my mouth. Is this the arteritis or the prednisone? What's freaking me out the most is my vision - I am so afraid. I do not understand why it is taking so long to see a specialist and is a neurologist going to be able to put all the pieces of the puzzle together? No one around me has any idea or interest in learning about this so I feel completely alone and lost. The more I read the more concerned I become. Please communicate with me and share your experiences. Thanks and good luck.
kamulrooney Message
1 Aug 2011, 08:47 AM

Royce21657. They should not delay! Your treatment should involve a Reumatologist and Vascular Surgeon. This disease is an autoimmune malfunction. The only way to confirm it is by a bioposy of the temporal artery. My Mother had the headaches, muscle stiffness and weakness then very quickly she got double vision and then blindness. No one knew what to do or how quickly they had to act. They did an MRI which doesn't show this disease at all. She is blind now because we were referred to a neurologist. She didn't receive any steroids like you are. She was sent to a retinal surgeon because she lost her sight and he rushed her into the hospital to try and save her other eye. They gave her massive amounts of steroids via IV for three days and did the biopsy right away. None of the usual tests a neurologist does will assist in diagnosing this disease. They need to do a blood test which includes a measure of the Sedimentation rate of erythrocytes in your blood. This test is the best indication of Temporal Arteritis besides confirming by a temporal artery biopsy. I hope this helps you. Please don't let them wait too long. My Mother's blindness appears to be permanent.I'd like to prevent this from happening to anyone else. The stiff neck and shoulders is another disease that seems to come on the heals of the Giant Cell Arteritis. I haven't found out much about this second phase of the disease. The Mayo clinic website was of some use to better understand this. It sounds like they aren't giving you enough steroid to keep the inflammation down. This will cause damage if they don't keep it in check. That's when you can have vision loss. Be persistent with the doctors and insist being seen as soon as possible. Once the Optic Nerve is deprived of blood flow, it dies. I hope some of this helps.
Danu Message
8 Mar 2012, 04:40 AM

Hi, Royce -- Kamulrooney is spot on. A rheumatologist is the ticket for you. My rheumie has helped me in so many ways. and you should have the biopsy for GCA. I was afeared, but it all worked out. Vision loss only occurs if you don't get on Pred early on. Sounds like you are on the right track. Normally Rheumies deal with this rare condition regularly. Get a great referral and get in quick.