Mayo Clinic Connect
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.
Liked by captainkenny
Has anyone remissions become active again? My sed rate and crp are high again? Currently on 7 mg of predizone .
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Yes, it is a bouncing ball. You think everything is going well. Blood markers are down, you feel well and than it starts again. What I have found out is to get the markers down and feel better I did not have to go on such a high dose of prednisone as I did in the beginning. Plus able to reduce the prednisone at a faster rate. For me this has happened a number of times in my 2.5 years of being on the devils drug.
@654321 – put the little @ symbol and the persons identification. All of us will see your posting. I have read that it can become active again. How long have you been on Prednisone? I had to go back to 20 mg during my taper. I was at 17.5 mg. I was away so I don’t know what my Sed Rate was at the time. Usually they take you back up to the level where you did not have symptoms. They took me back to 20 mg for a few weeks and then I started down again. How high is your Sed rate? How long have you had Temoral Arteritis?
Just wanted to let everyone know that I have not dropped the face of the earth yet….I have what appears to be a remission of symptoms for the past eight days with no treatment….I am enjoying being pain free for the time being but am wondering to myself if anyone else has experienced such an occurrence?
I am still going to see my Eyes, Ears, Nose and Throat Specialist this coming Tuesday and have an appointment with a different RA Specialist for August 22nd (the earliest I could get in to see this one). So will look forward to discussing this remission of symptoms. and request for an extensive eye exam and temporal artery biopsy….I don't know if this ever goes away completely on it's own. I also realized that I had a treatment of AMOX-CLAV 875-125 MG for TABLET (a strong antibiotic which I never had before) for ten days just one week or two prior to the onset of the initial symptoms back during the end of January and the beginning of February and wonder if this could have been the trigger for my Temporal Arteritis then and if it may be weaning out of my system finally? Lots of questions, but so thankful right now for the let up of symptoms presently.
@charann2000 – I have been wondering how you have been doing. I knew you had an appointment coming up next week. Maybe your Sed Rate will be down. It would be nice if you did not have to go through with the biopsy. It would be great if all your symptoms go away.
Liked by John, Volunteer Mentor
I was sure I fit the profile for GCA when I heard it it was more prevalent in Scandinavian countries. My father was born in Sweden, my mother’s folks were also born there, and there are lots of scandinavians up here in Minnesota.
@captainkenny – I wanted to let you know that I had my ACTH Stimulation test last week at Mayo. I spoke the Endocrinologist the next day and my results showed that my adrenal gland will start back up in the future. We just don’t know when. I did have pain in my right eye and above the ear on the one day that I could not take Prednisone. This bothered me because now am wondering what the Neurologist will do with this information. I will see my Neurologist in June.
Liked by Teresa, Volunteer Mentor
It will be a year in July. They really have a number on me. No absolute diagnosis yet beside
@oregongirl – That is really too bad. I hope they can figure out what is going on with your back.
@MLeeB – Do you have GCA or are you taking Prednisone for another condition?
I have GCA.
I have temporal arterieres . Is it the same thing if so why two names?
I have answered several of these sorry . I have had t a for around five years I think . It went into remission and after moving from ky to Texas it is back. My crp is what I can t get down . Sed rate had gone doen but is now in the 40 s crp
Is 11.6 I get blood work every four weeks
@654321 – Hi – They call it Giant Cell Arteritis. It is the same as Temporal Arteritis. Giant Cell Arteritis is demonstrated in three areas of the body. The most common is that demonstrated in the temple arteries. All three have in common the giant cells as an end manifestation. The other two are inflammations in the arteries in the brain and the third is the main aorta of the heart. I have been told to have a chest x-ray each to check the aorta for an aneurysm. I had my first last December. My step-son died last August of a ruptured aortic dissection. Also, I have read of cases where the GCA was found when the person had surgery for an aneurysm in the aorta of the heart. It is an interesting disease but one I wish I did not have. I worked for 31 years in a medical office. I had never heard of Giant Cell Arteritis until I was diagnosed with it.
@654321 – How much Prednisone are you taking now.
@MLeeB – I like what you call the Prednisone. I am at 5mg and the swelling in my face is going down but still have my extra 12 lbs. I can’t wait to get off of this drug. I must say it sure helped while raking our 5 acres after Erma. We have 180 oak trees and just finished cleaning up last week. Now we are back in hurricane season. The next one might kill me from all of the clean up.
Thanks….sorry that I did not have anything to say for a while but all was relatively calm until one week ago when I gashed my leg into the side of the fireplace hearth and had to have 12 sutures sewn into it at the ER. But aside from that Tinkerbell, have you ever heard of Temporal Arteritis going into remission or just disappearing on its own for about 8 or 10 days now without taking anything whatsoever?
@654321 – When I was diagnosed with GCA my Sed Rate was 38 and they started me on 60 mg of Prednisone. That seems to be a low amount but if it works that is great. I hope you can get your numbers down.
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