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
Still bruising…bruised are larger but not bleeding as easily as before. Headache and neck ache haven't gone away. Dr. Says blood work is normal.
Liked by John, Volunteer Mentor, Lisa Lucier, Becky, Volunteer Mentor
I was diagnosed with GCA in late August and put on 50 mg of Prednisone. I am now down to 20 mg and have a dr.'s appointment on 1/2/20. Some of the side effects I have had include: trouble sleeping, fatigue, swelling of feet, bruising, and a puffy face. I suggest the book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition by Kate Gilbert. I have found it very informative even though it's mostly about PMR. Good luck and keep in touch.
Liked by John, Volunteer Mentor, Ethan McConkey, Moderator, Becky, Volunteer Mentor
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I bought the book one man s journey and it is interesting . He has done a lot of research and has a lot of graphs In it. He is 95 years old. It s a real easy read, already knew the information , but it s great for me to find information at all about this crazy disease we all share.
Liked by John, Volunteer Mentor, Becky, Volunteer Mentor
Thank you..will look for it and buy it. I can use all the support and info I can get. No one's even heard of GCA!
Liked by Becky, Volunteer Mentor
Unable to find this title, can you tell me the author?
I am traveling and will text it tomorrow . Can t think of his name. Found it on amazon.
Liked by Becky, Volunteer Mentor, geniecm
Hello @paddington — Welcome to Mayo Clinic Connect. Thank you for the private message and allowing me to post it in this discussion. I believe your experience will help other members with similar symptoms.
I was diagnosed with GCA/TA in January 2020. At a January 9th office visit, I told my PCP (Dr. A.) about my symptoms: sudden increase in severity of what had been a chronic headache, now affecting my entire head and jaw claudication (pain when chewing or even opening my mouth). She very wisely immediately suspected TA because of my age (79) and ordered immediate tests at the LabCorp in her office. My sed rate was 117; my C-Reactive Protein was 4.2. She immediately referred me to a Rheumatologist (Dr. M.) who saw me on January 14 and started me on 40 mg. prednisone. I took my first dose after breakfast 1/15/20. By bedtime, I had major relief, not only of the severe headache but also of my spinal stenosis pain of many years duration. Brain fog that I'd had for almost 18 years of coping with intractable pain disappeared. I now call Prednisone a Magic Bullet. I'm so happy to have my Mensa brain back that I'm willing to put up with a lot of physical symptoms.
I had bilateral temporal biopsies done 1/21/20 by Dr. U. By my second visit to the Rheumatologist on 2/13/20, my sed rate had lowered to 61, not enough, so she increased the Prednisone to 60 mg. She prescribed a biologic steroid-sparing agent Actemra because I am a type II diabetic and my elevated glucose levels – caused by the Prednisone – are worrying. We requested that my insurance company approve this very expensive med. My insurance company approved the Actemra; I began taking in 3/6/20.
By my third vist to her on 3/12/20, my sed rate had lowered to 35, normal for my age, so she decreased the Prednisone to 50 mg. and plans to decrease it to 40 mg after 3 weeks if all goes well. I have begun having symptoms of steroid myopathy now – weakness and tiredness in the pelvic girdle area when I stand or walk. Dr. M. thinks physical therapy will help me get back to normal, but just slowly and safely increasing my activity level, for now, is best. I had been sedentary for years and using a walker much of the time because of the spinal stenosis pain.
I hope this info helps others. I have wonderful doctors (here in Surprise, AZ) who fast-tracked me to getting Prednisone quickly to prevent blindness – one of my greatest fears.
I am an avid researcher – retired Lawyer here! Would you like me to provide some of the links that have been very informative and helpful?
Would love to see the links that you found informative and helpful! Can you Click the View & Reply button and share the links with us?
Liked by paddington, Dr.Tim in Arizona
@paddington asked me to post the following additional information and links that helped him since he is not yet able to post links…
I found that the more I learned about GCA, the more I felt capable of handling whatever issues rose during my treatment.
Here are the links:
This is the most complete discussion of GCA that I have found. It is a 12-page peer-reviewed article that appeared in Eye and Brain 2019:11. It is well documented, written by a group of doctors in Texas.
Nervous about having the diagnostic biopsies? Want to know what to expect?
Query ""temporal artery biopsies" on YouTube
Actemra is the first prescription medicine approved by the FDA to treat GCA. It is very expensive but financial assistance is available. I have been told I am likely to be on Prednisone AND Actemra for 2 years, the usual length of a GCA treatment plan. Relapses are not an unusual response to a lower dosage of Prednisone during the tapering off process This can greatly extend the length of a GCA treatment plan.
Frequent Lab Tests will be required throughout treatment for GCA. This website has a good explanation of those tests – and the ones required/recommended BEFORE you begin your treatment plan.
According to the NIH, no definitive diagnostic tests exist for Steroid Myopathy.
And now we have Coronavirus. Taking Prednisone lowers our resistance to infections. We have been given tremendous motivation to avoid crowds and stay at home because the coronavirus is known to be especially fatal to the elderly. A true double whammy.
Liked by Dr.Tim in Arizona
Thank you so much for this valuable information. I have been on 5 mg of prednisone for a long time . Not a lot of information out there about this . So thanks again.
Liked by John, Volunteer Mentor, paddington
@paddington — you have already helped another member! Kudos for persevering with me through private message. I hope you can see the thank you from @654321
Liked by Teresa, Volunteer Mentor, paddington
Neurologist said I have this just by my symptoms and told me all l can take is Tylenol. .? Is there any help besides that?.?
Hi @tootstilbury and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Giant Cell Arteritis called "Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)." I did this so that you can meet other members talking about how they manage GCA, like @charann2000 @geniecm @654321 @paddington @MLeeB @elderdiana @crhp194 @captainkenny and others.
You may also be interested in these discussions:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
– Giant cell arteritis https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/
Tootstilbury, were you able to meet your neurologist in person or was it a teleconsult? What symptoms are you experiencing?
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
I have had GCA since 2016. I had no symptoms but it was discovered during open heart surgery. I do not have temporal arthritis symptoms…therefore, no pain. However GCA needs to be treated so I was on prednisone and methotrexate. The prednisone was tapered after about 2 years and I no longer take it but still taking the methotrexate. I have had no problems with it except that now if affects my lung and kidney tests. Mayo says the numbers are ok for now. I send them a blood test every three months. Worst side effects were with the prednisone with weight gain. I am one of the lucky ones as I have been able to tolerate every med given to me. Do not assume you will suffer because you may not. In the meantime, I wish you the best. Stay safe, stay well. Carol
I was lucky to be diagnosed with temporal Arteritis quickly after only 2-3 weeks of classic symptoms—headache, painful to touch my head, and jaw pain. I started 40mg Prednisone next morning and all symptoms were Gone in 2-3 hours. Then I had biopsy of right temporal artery to confirm. I subsequently got a rheumatologist who put me on methotrexate to complement the Prednisone, and I visited every few months as well as regularly monitored my blood. My regular doctor also prescribed meds to offset negative reactions to Prednisone which I weaned down to 0mg over two years. Next Month (June 2020) will be my meds-free anniversary, and for that I am very grateful. I wish you well and good luck
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Dr.Tim in Arizona
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