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charann2000
@charann2000

Posts: 42
Joined: Nov 02, 2017

Temporal Arteritis or Giant Cell Arteritis

Posted by @charann2000, Wed, Apr 25 12:25pm

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

REPLY

Hello @charann2000

There is currently another active discussion on giant cell arteritis here that you may want to read through:
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/bookmark/?ajax_hook=action&_wpnonce=e2b2fbfe6e

I’m tagging our Moderator Kanaaz (@kanaazpereira) to see if she can move your question to that discussion for more visability. I’m also tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@charann2000 — do you have any questions about giant cell arteritis?

John

I wish I could tell you, don't worry, they will cover your pain. Wrong. I have RA and I can assure you, the only time I have no pain is when I am not going thru an episode

@oregongirl

I wish I could tell you, don't worry, they will cover your pain. Wrong. I have RA and I can assure you, the only time I have no pain is when I am not going thru an episode

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Drs are terrified if they give drugs they may get into trouble. I see a pain clinic in about 3 weeks. I have waited over 3 months for appt.

@johnbishop

Hello @charann2000

There is currently another active discussion on giant cell arteritis here that you may want to read through:
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/bookmark/?ajax_hook=action&_wpnonce=e2b2fbfe6e

I’m tagging our Moderator Kanaaz (@kanaazpereira) to see if she can move your question to that discussion for more visability. I’m also tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@charann2000 — do you have any questions about giant cell arteritis?

John

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Thanks for trying to get me into the correct discussion group on this matter….I greatly appreciate it!

Been treated for ten months. Started on 40 mg Prednisone which alleviated my symptoms 2-3 hours after first dose. Now down to only 10 mg and luckily no side effects.

I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. – 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.

I would be happy to tell you about my treatment and problems.

@tinkerbell

I would be happy to tell you about my treatment and problems.

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How long did you have your symptoms before being accurately diagnosed? Also, if I may ask how old are you? I am 69 almost 70. Did you experience a great deal of pain on both your temple and your eye on the same side which sometimes appears to go away but usually comes back?

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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Thank you for sharing this very valuable information with me, tinkerbell. I have had this for about two months now and actually thought it was related to my sinuses and I was going to a sinus specialist which took one whole month to get in to see him. Yesterday morning I saw him and began with mentioning the pain in the left temple and the left eye. He really honed in and listened to me closely….after doing a brief examination of my nose and several other questions which I answered pertaining to my sister having RA, he said I don't believe the temple situation is with your sinuses….it could be Temperol Arteritis. He said he would write an order for a CT Scan with contrast die of my head and the necessary bloodwork in order to make determination. He did not mention to me the possibility of going blind….I suppose he did not want to frighten me before a final diagnosis. Last night I went on Mayo.com and researched this and was horrified to hear how serious this could potentially be. The going permanently blind bothered me more than anything else and still does…I think I am in a panic mode right now. I am going tomorrow for all of the blood work and they are doing the CT Scan of the head on this Friday at noon. Right about now my temple is throbbing and I am afraid to go to sleep as I may wake up without vision. I wish that my Specialist would have stressed getting me into the diagnostic areas that same day, if possible. Right now, I feel like I am losing precious time! I hate the thought of worrying the entire weekend for the results and perhaps they will be able to hasten the process given my circumstances. If not, my sister has RA and perhaps I will ask her for some of her Prednisone to get me through the weekend until I can see a Neurologist. You can tell that I did not see this coming….I was blind-sided, pardon the ill pun! Once again, thank you for your input. I will let everyone know what is going on as soon as I get the test results!

@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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I also have giant cell arteritis but mine is in the aorta. I was diagnosed in 2016. There are no symptoms for my Kind but I can tell you that medications will take care of your arteritis. My arteritis is checked by a simple blood test every three months and my inflammation continues to go down. Please don’t be consumed by worry as there are answers to your problem. Probably you will be on prednisone and an anti-immune drug. The prednisone will help very quickly and you will feel better. Take care and best to you!

CRHP Yesterday I saw my doctors nurse. They wanted to go over everything about my three weeks in the hospital. They also discovered (possibly) that I may be inclinded to pass out at times. My most recent falls are absolutely unknown to me. I pass out and come to and then the doctors start their continuous "could be this" or Could be that". I am presently being seen at the University. I chose this for my care as I thought it would be easier to have all my doctors in one place. Or so I thought. I take a blood thinner, so the last fall had my kitchen looking like a murder scene They have done all the brain scans they can. So far my pain med is Tramadol. That is all I can get out of any doctor at the University. Two doctors have referred me to pain mgt which I will see soon. I don't know what is going to happen to our kids and grand kids with this new NO DRUGS by doctors. It is the abuse of narcotics that have placed us in this position. Usually I see my RA doctor once a month. Now it is every two months. I get my blood work done. I agree the prednisone does the trick for my pain. But, I only get one low dose once a month (now 2 months) I get a few hours of relief. I see pain mgt in three weeks and hopefully, I can get a prescription then. Here I thought I would be traveling in my retirement. What happened to my travel in retirement plan? The only travel I am doing is back and forth to the doctors office. I don't get depressed that often. In fact I enjoy living alone vs a Senior Independent living. I worked with the public for 40 years. I have had my fill. I am presently looking for a church. I do a lot of study on my own. My apt. is spotless. I keep myself busy. I sold my home and just wanted the convenience of apt living. I am SO fortunate to have found a very very quiet complex. These used to be military family housing They are remodeled beautifully. The complex really does background check on tenants. They are very careful who they rent to. I wish all of you luck with each and every pain we have from now on. I turned 76 in the hospital. I just wish I was not paying the price for drug abusers who have ruined it for us. Maybe just maybe the pain doctor will give me some relief. I think of all of you everyday.

Lee

@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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Treatment for my temporal arteritis started
ten months ago, sounds similar to yours: Prednisone, Methotrexate, and blood monitoring every three months. Developed itchy rash six months ago; my Rheumatologist doesn’t think it is related to my Giant Cell Arteritis.

@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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Well can, your symptoms are identical be to mine. Then one day the rash began. Omg. It lasted about 5 years. I am not kidding. The med she gave me is Mometasone furoate. Actually dermatologist gave me this. Rash free now. It was awful..

@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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I would recommend that you not start on any Prednisone now. My CT scan did not show anything so that is not the important test as far as the Temporal Arteritis. The most important test is the Sed Rate and you may want to try to get it done today. The other thing is you might want to go to the emergency room and they will do all the test right away. They listed the Temporal Arteritis as life threatening on my emergency room papers. It is very scary and my father went blind in his 60’s and that has always been something I was afraid of happening to me. At least your doctor ordered test on you and seemed to recognize what it might be. That is better than any of my doctors in Orlando. The biopsy will show the Giant Cell Arteritis even a week or so after starting on the medicine. This is not a disease you want to mess around with. Good Luck – do keep me posted. My recommendation holds – go to the emergency room.

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