Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Giant Cell Arteritis

What is Giant Cell Arteritis?

Giant Cell Arteritis is an inflammatory disease of the blood vessels.


Giant Cell Arteritis is an inflammatory disease of the blood vessels.
Acknowledgement of Giant Cell Arteritis has not been added yet.
Synonyms for Giant Cell Arteritis has not been added yet.
Headache Numbness in arms/hands Failing eye sight
Narrowing of the major arteries to closure, typically at the temples but may also be along the upper aorta to the arms. Other arteries should be checked.
Diagnostic tests of Giant Cell Arteritis has not been added yet
Steriod - prednisone Methotrexate
May be placed in remission over time but can not be curried/corrected. Must be followed for rest of life.
Tips or Suggestions of Giant Cell Arteritis has not been added yet.
References of Giant Cell Arteritis has not been added yet.
Temporal Arteritis - sounds like Chinese Cuisine Created by royce21657
Last updated 8 Mar 2012, 04:40 AM

Posted by Danu
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.

Posted by kamulrooney
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.

Posted by royce21657
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.

Love/Hate Relationship with Pred Created by Danu
Last updated 8 Mar 2012, 04:36 AM

Posted by Danu
8 Mar 2012, 04:36 AM

Hi, All ~ Giant Cell Arteritis and Polymyalgia Rheumatica came into my life in May of 2011. Prednisone is almost worse than the autoimmune disease. My frustration is so high after 8 months, I am ready to be free, free, free of all of it. But I don't want to lose my eye sight, have a stroke, or any of the other things I've been warned about. How about you? Everyone coping somehow? Just about to start counseling since the irritability and lack of focus are wreaking havoc ...

Community Resources
Title Description Date Link

Clinical Trials

Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit to enroll.

Community Leaders


Expert Questions

Ask a question

Community User List

Having read what I wrote here while confined to my hospital room on day three of my current stint for very low hematocrit values (<2.5) (July 2021)
I realize how atrocious what I had...

Currently dealing with Giant Cell Arteritis and Polymyalgia Rheumatica. Taking Prednisone. Suffer from double depression as well (severe, recurrent depression and dysthymia). Such a deal =)
My Mother has been diagnosed with Giant Cell Arteritis
Diagnosed with Giant Cell Arteritis
I was diagnosed with GCA in October 2006. I was on Prednisone from 10/06 until this week. It is in remission now.
Recently became ill. ? of giant cell arteritis, or possibly lupus.


I am 55 years old and always thought I was healthy even though I have struggled with chronic lower back pain for over 30...
Surviving CNS Vasculitis

Start a Community

Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Temporal Arteritis - sounds like Chinese Cuisine

Created by royce21657 | Last updated 8 Mar 2012, 04:40 AM

Love/Hate Relationship with Pred

Created by Danu | Last updated 8 Mar 2012, 04:36 AM


Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.


Our Resources

Our rare disease resources include e-books and podcasts





Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.