1. < Polymyalgia Rheumatica (PMR)

Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

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.

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crhp194 | @crhp194 | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

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!

REPLY
Texas Freedom | @oregongirl | Apr 26, 2018

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

REPLY
1 reply
captainkenny | @captainkenny | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

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.

REPLY
Texas Freedom | @oregongirl | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

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..

REPLY
tinkerbell | @tinkerbell | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
charann2000 | @charann2000 | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

Thank you for your kindly words and information.

REPLY
charann2000 | @charann2000 | Apr 26, 2018
In reply to @oregongirl "CRHP Yesterday I saw my doctors nurse. They wanted to go over everything about my three..." + (show)
@oregongirl

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

Jump to this post

Hope that you are not passing out any more and that they are able to resolve this issue in a timely manner.

REPLY
tinkerbell | @tinkerbell | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

It is Tinkerbell again. I was just telling my husband about your problem and he said (he has done tons of research on this since my diagnosis) the primary symptom of insufficient oxygen to the eye is eye pain. He said you should go to the emergency room right away. They need to get you started on more than 40 mg of Prednisone. I was put on 60 mg. They need to schedule your biopsy as soon as possible. Please do not wait - you do not want to go blind because you waited. Also, you will not get the results right away from the lab you planned to go to. This needs to be done stat!! Make sure the doctor in the emergency room does an eye exam. Mayo had a neurologist see me that did an eye function test in the emergency room. Keep me posted.

REPLY
charann2000 | @charann2000 | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

Hi Tinkerbell, I just read your most recent message and I have called my doctor's office (Specialist). I have had pain off and on in the left eye for the past several months with the left temple. My nervous system is becoming shot from this right now. I planned on going to the hospital for the blood work today, so if Medicare will cover the Emergency Room visit, I will do it. I wish my doctor would have mentioned this to me regarding potentially going blind and any escalation of pain in that eye needing to take immediate action. I will let you know as the day progresses what is going on.

REPLY
barba | @barba | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

It is Tinkerbell again. I was just telling my husband about your problem and he said (he has done tons of research on this since my diagnosis) the primary symptom of insufficient oxygen to the eye is eye pain. He said you should go to the emergency room right away. They need to get you started on more than 40 mg of Prednisone. I was put on 60 mg. They need to schedule your biopsy as soon as possible. Please do not wait - you do not want to go blind because you waited. Also, you will not get the results right away from the lab you planned to go to. This needs to be done stat!! Make sure the doctor in the emergency room does an eye exam. Mayo had a neurologist see me that did an eye function test in the emergency room. Keep me posted.

REPLY
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