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.

Liked by captainkenny

@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 your kindly words and information.

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@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

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

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@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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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.

Liked by charann2000

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@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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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.

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@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
@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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Hi – Medicare covered my emergency room visit.

Liked by charann2000

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@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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Hello @barba — The reason your post has a lot of garbled text information in it is that you clicked Reply to the message from Connect in your email program. Instead I would recommend going to the bottom of the email message and clicking the View & Reply button in the message. It will take you directly to the discussion and allow you to post your message there.

John

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@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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HI, Tinkerbell, I admitted myself to the Emergency Room yesterday afternoon after reading what you had to say on the 26th pertaining to your husband's research and also called my doctor's office…they said to go to ER if it was that bad. Well, I got all of the blood tests and it really helped being in the ER to calm my nervous system down. The blood work all came back and from what I was told it was good. My sed rate was 29….only 9 points higher that the range of 0-20, which the Physician's Asst. said was not that much elevated to be concerned about. So they told me I could go home and come back tomorrow, (Friday) for my regularly scheduled CTScan of the head, as it would bill at a lesser rate than thru the ER. I went back today and had the CTScan and my doctor should get the results early next week. Today, Friday, I actually had no pain whatsoever in my head the entire day without taking an OTC meds. I did not take any pain medication for the last three days after reading what you had told me and I thank you for that additional bit of info. The PA at the hospital said I may have a migraine. I told her that I very seldom if ever get head aches my entire life….I just dismissed that comment.
I will let you know next week when I speak with my doctor and he has all of the test results back. Once again, thank you for your guidance with this situation….I really appreciate it.

Liked by Jamie Olson

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@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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Hi – so happy to hear you did go to the emergency room. As I told you before my Sed Rate was 37 and they decided that was high enough to start me on medication. It will be interesting to see how this turns out. Unfortunately, the only positive diagnosis is with the biopsy. I hope you do not have Giant Cell Arteritis. It is a long journey once you get started on the medication. I am looking at 1 1/2 years at the least amount of time. Do let me know what happens.

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@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 will let you know as soon as I hear anything, Tinkerbell.

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I got the CT Scan results back today and luckily there is no sign of anything wrong on that area. I have been referred to a RA Specialist since certain areas of my blood work are marginal and my Sed Rate is 29….I still experience pain in the left temple but not as severe as last week when I self-admitted myself to the ER. I am going to the RA Specialist on May 10th and will post what transpires after that meeting.

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Did you get much help at the ER?

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@oregongirl

Did you get much help at the ER?

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I did get an extensive amount of blood work done, including SED. RATE, which is part of the marker for Temporal Arteitis and I had a CT Scan of the head scheduled for the next day since I had already had that scheduled prior to the ER visit and they felt, based upon my blood work results that it could wait until the next day. I will say that I felt a great deal of comfort phychologically being in the ER as opposed to sitting in my house and have this situation escalate with extreme pain and worry. I am not one to run to the ER unless I actually break some bones…so, to answer your question, it was most helpful to me and more comprehensive in the amount of blood work tests taken at one time. The only criticism I would have is that the second Physician Assistant really put it into the category of a Migraine headache which I knew it was not…never had them and very seldom even have headaches….this constant burning on the left temple which may escalate or subside, but it is always almost present. The first Physician Assistant left at the end of his shift and he was more knowledgeable I felt. It is a shame that they don't send a doctor in at some point with these ER visits….a Physician's Asst. is not a doctor and really should not be offering their personal views in such a situation in my opinion!

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@charann2000

I got the CT Scan results back today and luckily there is no sign of anything wrong on that area. I have been referred to a RA Specialist since certain areas of my blood work are marginal and my Sed Rate is 29….I still experience pain in the left temple but not as severe as last week when I self-admitted myself to the ER. I am going to the RA Specialist on May 10th and will post what transpires after that meeting.

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Hi – I am not surprised that the CT scan was normal. Mine did not show anything. You might want to think about seeing your eye doctor. The Neurologist really checked my eyes out in the Emergency Room. I saw my optometrist after I was diagnosed and she was very knowledgeable about Giant Cell Arteritis and knew a lot about the disease. Maybe you could get in before seeing the RA Specialist. Where do you live? I am in Orlando, FL.

Liked by charann2000

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@oregongirl

Did you get much help at the ER?

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Hi again. Before I was diagnosed I saw the PA at my Internist's Office. My blood pressure was high and all she wanted to do was double the amount of my blood pressure medication. I told her my Dermatologist's husband (a physician) suggested I have blood work and a CT scan if I continued to feel bad. She said it would be a waste of money and time. I talked to my Cardiologist after this happened and he could not believe that she wanted to double my medication. He said of course your blood pressure was high with this disease and not feeling well. So I certainly agree with your thoughts on the PA. I hope someone can figure this out for you.

Liked by charann2000

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