Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Hi Charann,

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

So glad to hear that. Charann. I have had no flare ups with the GCA but MRIs show irs still there. Take care and wish you the best. Carol

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?

My neurologist diagnosed me by phone when I described my symptoms...I thought I had sinus symptoms but when I had a strange sensation of "fluid" starting at the top of my head and flowing
Down to my chin plus other symptoms he told me I had Giant Cell.....And all I could take was Tylenol.
I understand Prednesone ? Can have serious side effects... but I would try it if prescribed....
Also like other people I have other medical problems.....I have Adhesions and told by a General Surgeon that when I cannot have a Bowel Movement and Vomit....Get to Emergency ASAP.
I am trying to survive on mostly LIQUIDS because of this and for the Icing on the CAKE... I fell a few weeks ago and Broke My Wrist and l am waiting to hear from another Dr to arrange to have my
Thyroid operated on.
OPEN to Any and All Suggestions.
Thanks for your Interest

My neurologist diagnosed me by phone when I described my symptoms...I thought I had sinus symptoms but when I had a strange sensation of "fluid" starting at the top of my head and flowing
Down to my chin plus other symptoms he told me I had Giant Cell.....And all I could take was Tylenol.
I understand Prednesone ? Can have serious side effects... but I would try it if prescribed....
Also like other people I have other medical problems.....I have Adhesions and told by a General Surgeon that when I cannot have a Bowel Movement and Vomit....Get to Emergency ASAP.
I am trying to survive on mostly LIQUIDS because of this and for the Icing on the CAKE... I fell a few weeks ago and Broke My Wrist and l am waiting to hear from another Dr to arrange to have my
Thyroid operated on.
OPEN to Any and All Suggestions.
Thanks for your Interest

@tootstilbury As you just mentioned adhesions from GI tract surgery, I'd like to invite @thull to this conversation. She has had a specific surgery at Mayo Clinic for that problem. Perhaps she can fill you in on that.

Was your surgery in the colon or in the upper digestive tract?

I had 4 abdominal surgeries within 12 months. After the second one to reverse a temporary colostomy, I got a blockage in my small intestine from adhesions. I was in the hospital for 17 days.They opened me back up on day 11 to try and get to the blockage but the surgeon said the adhesions were so bad, it looked like a bottle of white glue had been poured over my intestines. They couldn’t do anything but close me back up. By day 15, they did another enema with contrast and that seemed to help open things up some, but I went home with a PICC line, on TPN and a drain coming out of my stomach. Not fun. Finally after about 10 days, and doing some gentle abdominal massage, things literally blew open, and I was totally cleaned out! I really believe the massaging of my abdomen helped kind of unstick my intestines and get things moving. I was very gentle, though, as I had a giant incision to deal with.
Unfortunately, about 2 1/2 months later, the diverticulitis came back, went to ER, got antibiotics, then home. 2 weeks later, back in ER and blockage was so bad, I had to be admitted. In for 7 days, then got to come home for Christmas on clear liquids only. Boost Breeze was a great find, good tasting, 250 calories and 9 grams of protein per serving.
I had to order it from Amazon. I would highly recommend it for the times when you need to just do clear liquids, but need some good nutrition. After Christmas was over, they brought me back in for more surgery and ended up doing Deloyers procedure. The adhesions were still so bad, they had to switch from laparoscopic to opening me all the way back up. They spent 2+ hours laising all the adhesions and perforated the small bowel in the process. Surgery ended up being 6+ hours. 5th surgery was March 1, 2019 to do a scar revision where they had closed the colostomy site. With the 3 & 4th surgeries, it had started pulling and buckling that area and it became uncomfortable. Luckily, that was outpatient.
Feeling pretty good now, just careful with the diet. Low residue is what works best for me