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
Blood work scheduled for 12/3… Meanwhile I am miserable with both GCA symptoms and Prednisone side effects. Headache, temple pain, jaw pain, teeth sensitivity, fatigue, blurred vision, irritability, trouble thinking, speaking and walking. Trouble sleeping, thin skin, bruise easily and bleed profusely..fun, fun! plus my tongue feels like it has wiped a dirty floor. Down to 30 mgs from 50 mgs (8/26/19).
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As they say – I feel your pain. The Prednisone side effects are awful but if you are at 30mg you should be close to the point where they become tolerable. When I checked into this forum I was miserable and @tinkerbell told me I should be able to sleep again when I got to 20mg. She was right. Even at 25mg I experienced a big quality of life improvement. So maybe on 12/3 you will be able to drop it a little and start feeling better.
I had all the symptoms you mention but my headaches and jaw pain went away when I started on 60mg. My ESR was 91 when this all started in late April. I'm now at 12.5mg and I'm going to 10mg on Dec 1st with blood tests scheduled in mid December.
That probably doesn't help much but I just wanted to encourage you to hang in there because it does get better.
Liked by John, Volunteer Mentor, Becky, Volunteer Mentor
I guess I was lucky to have had excellent quick diagnosis and care, and no symptoms or side effects from the Prednisone. I started on the two year reduction program at 40 mg which eliminated my headache and jaw pain in two hours, was completely off the Prednisone and Methotrexate last June 1st, and only need my blood checked every six months. Good luck.
It s interesting how these are all so similar. Tinker bell has been so good to advise .
So sorry it is really aggravating ! You can do this , so glad you are on this post. It s been helpful and really hope it helps make your pain a little easier .
Liked by John, Volunteer Mentor, Becky, Volunteer Mentor, geniecm
Thank you so much for your response! It does help me to understand that others have gone through what I am experiencing. Your support is appreciated and needed. I am grateful.
Thank you. I am really in need of support. I hate being a complainer to my family. I think they are scared and in denial since what I am now is so not me. Your response does help and is welcomed.
So glad to talk. It really helps me in that no one knows anything about this weird disease . So happy to have this communication.
I never heard of temporal arteritis either when I was diagnosed. However it’s not some weird mysterious disease doctors don’t know about. My doc quickly diagnosed it and confirmed with a biopsy; my rheumatologist treats giant cell arteritis on a regular basis. Trust your doctors.
Yes, I have to trust my rheumatologist at this point since my new primary care doctor dropped the ball. Considering how serious this condition can be, misdiagnosis or waiting too long to treat it properly could have resulted in blindness. I am glad that I advocated for myself since I didn't trust or have a relationship with my new doctor..
Liked by Becky, Volunteer Mentor
It s always good to be your own advocate .
My ophthalmologist and rheumatologist said it is still considered to
be rare. I believe this , because most of my friends and family like me ,had never been aware of It.
Agree totally. Crazy and weird diagnosis. My brother who has a Masters in Biology, has worked in hospitals and now teaches had to Google it.
In the day and age we presently live in, it is recommended to always advocate for yourself, especially when you know something is not right. A lot of primary care doctors are guilty of hanging on to the patients, putzing around and not admitting they are going nowhere fast, especially if you have good health insurance, (Medicare is considered to be the Gold Card for most of them). Don't get me wrong when I say this, but it is the absolute truth…always watch out for yourself, especially when you are older and hopefully wiser when it comes to your own health or that of loved ones. If a doctor is threatened or intimidated by this, I drop them faster than a hot potato and never look back! Good luck to you….you are on the right path way to getting better now!
Liked by Becky, Volunteer Mentor, geniecm
Thank you! I appreciate your input and affirmation. I am so happy to have found this forum. I have been feeling so isolated with no one understanding my trials.
Liked by dar9216, Becky, Volunteer Mentor
I too appreciate everyone's sharing of experiences. Diagnosed with GCA and Polymyalgia July 2018 and down to 5mg tomorrow, from 60mg. Yippee!! Only pain that has returned (at 7 mg) is the jaw, which is odd, because that had gone away immediately. Nothing compared to what the overall pain was. Hope to eventually get off totally, at some point, but I'm comfortable with what I'm doing. I just recently read a book on GCA written by an English woman, not a doctor. I think it was good I read it now and not earlier.
I would like to read a book about GCA. Can you give me the title and author's name? Thanks for your input…5 mg! so happy for you!
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