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
Oh my you really hit the jackpot! Good luck and hope you remain med free. Thanks for sharing .
I am still on five mg and it s been a long journey for me
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
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Thank you for your commentary. Mine has subsided….I believe that I have a very marginal variety….which I am thankful for given the comments from everyone else on this board. I have been drinking more water and have lost some weight which may or may not attribute to my loss of symptoms. I know that it could possibly flare up at any given time, but for now I am enjoying feeling okay.
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
What part of you are they MRI'ing?
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
Sorry to hear of all your medical conditions. Adhesions can form after G.i. Track surgery. Have you seen a gastroenterologist, besides your surgeon.does the surgeon want to remove the adhesions, which is scar tissue. Is it possible to hold off on thyroid surgery until your wrist heals..?
You have a lot going on right now.
You did not mention your age, but guessing over 65???
I’ve taken a few too many tumbles myself, so I understand the need to be super careful.
I would start with your general surgeon, and also see if latest surgery can wait. I’m sure you are getting X-rays of your wrist, and will need physical therapy.
Keep us posted.
Liked by Teresa, Volunteer Mentor
@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?
Liked by Colleen Young, Connect Director, John, Volunteer Mentor
Bless you as you have many issues ! I thought you had to have a biopsy to be sure about g a .
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
Liked by Teresa, Volunteer Mentor, Dr.Tim in Arizona
My goodness, you have been thru so much. My husband had diverticulosis, he would be given antibiotics, and told to watch his diet.
He was about 40-42 with his first attack, and second attack at about age 50s or so.
He never had surgery.
He was a big junk food eater,I had no control over his junk food since he ate it at work, he knew I did not approve of his eating habits.he eventually cleaned up his eating habits.
I hope you stay on the road to recovery. You are young at 55.
Liked by Teresa, Volunteer Mentor, thull
Thank you! Diverticulosis seems to run in my family. I can remember my mom being hospitalized with it while I was growing up. My dad and my sister have also dealt with it along with 2 of my cousins. I am the only one who has had to have surgery, though. Glad he cleaned up his eating habits. I have always been a pretty healthy eater, and one of the hardest things is not eating a lot of fiber, fresh fruits, veggies etc. My kids say I am on the Toddler diet…..chicken nuggets, French fries and Mac & cheese! Lol
Update…HAD A LOT OF PAIN A COUPLE Of weeks ago..went to Emergency…given Prednisone and arrangements were made go to Eye Specialists…saw 3 and they Recommend I have the Blood Test
Where Blood is taken from the Temple Arteritis as apparently that proves you do or do not have Giant Cell Arteritis..SO I had the Test 2 days ago. I now have to take Prednisone 20 mg once a day for 2 weeks….AND the Blood Test Results will take 4 weeks….But at least I will know!!!
Please keep sending information. ….much Appreciated
P.S. does anyone know how to ALSO send this message to myself?? So I can pass it on to family and possibly print?…
@tootstilbury, you should be able to copy your post and paste it into an email message to your family. If you are using a computer this might help you.
How to copy text and images from a web page: https://www.computerhope.com/issues/ch001328.htm
Liked by Teresa, Volunteer Mentor, Becky, Volunteer Mentor
So sorry about your news and being on prednisone . It s is a difficult drug all the way around . Only thing that helps temporal arteries . So they tell me. I’ve now gotten to 5 mg daily.
Been on this second round for about three years. Good luck to you. Any way I can help please let me know.
Not so bad every three months blood work and s evaluation
Since Giant Cell Arteritis has taken Center STAGE…
My GP is not following my Adhesion problem and Fortunately…SO FAR my adhesions are allowing me to have Bowel Movements (prayers Welcome)….
I had a Biopsy test for Giant Cell Arteritis BUT here in Saskatoon, Saskatchewan, Canada it takes a Month to get Results again (Prayers Welcome)
Liked by lioness
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