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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Still hopeful my rash/itch will one day soon be gone.

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@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 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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I got sidetracked to lots of discussions other than Temporal Arteritis, and am happy to finally be back where I belong.

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@tinkerbell

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.

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I was diagnosed with GCA three months after you. I started with 40 mg Prednisone and now down to 10 mg. Three weeks ago started going to Rheumatologist who added Methotrexate to see if it would relieve my rash/itch. Is the adrenal gland function somehow related to GCA?

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@tinkerbell

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

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I was an active 81 year old when my three classic temporal arteritis symptoms presented—mild re-occurring headache in right temple and forehead, sore to the touch, the final symptom that got my attention enough to call my doctor for an appointment ASAP, was my jaw so painful it was hard to chew my cereal. Only had symptoms 2-3 weeks before calling and getting in the next day after describing my symptoms. After reading the shares on mayoclinic.org, I’m grateful my Dr diagnosed pronto, ordered me to start 40 mg Prednisone in morning, and subsequently confirmed with biopsy.

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@tinkerbell

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.

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Hi @captainkenny, I have no medical training or background but did find a paper on National Institutes of Health site that infers the adrenal gland function is not related to GCA under the Results section of the abstract.

Hypothalamic-pituitary-adrenocortical axis function in patients with polymyalgia rheumatica and giant cell arteritis.
https://www.ncbi.nlm.nih.gov/pubmed/12621591

John

Liked by captainkenny

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@tinkerbell

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.

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Thanks John, Appreciate the prompt reply with information source.

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Just an update to everyone regarding possible Temporal Arteritis diagnosis. I saw an RA Specialist yesterday and I really did not get any information from him that I already knew and furthermore did not care for his attitude…this is the first time that I met a doctor which I actually felt was a true "quack" and an established one at that. All he could feebly tell me was that he did not think my SED Rate was all that terribly high and then felt my temples and said my pulse rate was good. He kept pushing for me to get another SED Rate blood test in his own blood draw clinic which I declined. I asked him if I should put cold or warm compresses on my temple in order to ease the pain and he said it really did not matter. He also was not that concerned about getting an artery sample and the final blow was that he actually told me that if I had Temporal Arteitis for three months already and have not gone most likely I would not go blind. That was the frosting on the cake for me…..I wish that I could call Medicare and tell them what I thought regarding this office visit….I can only imagine what he will bill Medicare for, probably $700 to $800 and he even did notice that I had a CAT Scan of my head done…..I wish that I had never gone to see him. I am now thinking of going to a good Neurologist back in the Aurora Healthcare Network. This Specialist visit was a complete waste of time and money all around.

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@charann2000

Just an update to everyone regarding possible Temporal Arteritis diagnosis. I saw an RA Specialist yesterday and I really did not get any information from him that I already knew and furthermore did not care for his attitude…this is the first time that I met a doctor which I actually felt was a true "quack" and an established one at that. All he could feebly tell me was that he did not think my SED Rate was all that terribly high and then felt my temples and said my pulse rate was good. He kept pushing for me to get another SED Rate blood test in his own blood draw clinic which I declined. I asked him if I should put cold or warm compresses on my temple in order to ease the pain and he said it really did not matter. He also was not that concerned about getting an artery sample and the final blow was that he actually told me that if I had Temporal Arteitis for three months already and have not gone most likely I would not go blind. That was the frosting on the cake for me…..I wish that I could call Medicare and tell them what I thought regarding this office visit….I can only imagine what he will bill Medicare for, probably $700 to $800 and he even did notice that I had a CAT Scan of my head done…..I wish that I had never gone to see him. I am now thinking of going to a good Neurologist back in the Aurora Healthcare Network. This Specialist visit was a complete waste of time and money all around.

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@charann2000 – I think your idea of seeing a Neurologist is a good idea. They certainly saved my vision. I was hoping this doctor was going to help you. The Neurologist could do another Sed Rate for you and see if it has increased. Thanks for keeping me up-to-date on your situation. I take it you are still having a lot of pain. Do you have any swelling running down in front of your hairline. Also, mine started with some swelling on the right side of my scalp which moved down to the area in front of my hairline. The dermatologist actually took a picture of it. Have you had any pain in your teeth. These are all symptoms I had but did not know they pointed to GCA. What was your Sed Rate again?

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@charann2000

Just an update to everyone regarding possible Temporal Arteritis diagnosis. I saw an RA Specialist yesterday and I really did not get any information from him that I already knew and furthermore did not care for his attitude…this is the first time that I met a doctor which I actually felt was a true "quack" and an established one at that. All he could feebly tell me was that he did not think my SED Rate was all that terribly high and then felt my temples and said my pulse rate was good. He kept pushing for me to get another SED Rate blood test in his own blood draw clinic which I declined. I asked him if I should put cold or warm compresses on my temple in order to ease the pain and he said it really did not matter. He also was not that concerned about getting an artery sample and the final blow was that he actually told me that if I had Temporal Arteitis for three months already and have not gone most likely I would not go blind. That was the frosting on the cake for me…..I wish that I could call Medicare and tell them what I thought regarding this office visit….I can only imagine what he will bill Medicare for, probably $700 to $800 and he even did notice that I had a CAT Scan of my head done…..I wish that I had never gone to see him. I am now thinking of going to a good Neurologist back in the Aurora Healthcare Network. This Specialist visit was a complete waste of time and money all around.

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@charann2000 – I was just reading an article that said 7-20% of patients with GCA had normal Sed Rates.

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@charann2000

Just an update to everyone regarding possible Temporal Arteritis diagnosis. I saw an RA Specialist yesterday and I really did not get any information from him that I already knew and furthermore did not care for his attitude…this is the first time that I met a doctor which I actually felt was a true "quack" and an established one at that. All he could feebly tell me was that he did not think my SED Rate was all that terribly high and then felt my temples and said my pulse rate was good. He kept pushing for me to get another SED Rate blood test in his own blood draw clinic which I declined. I asked him if I should put cold or warm compresses on my temple in order to ease the pain and he said it really did not matter. He also was not that concerned about getting an artery sample and the final blow was that he actually told me that if I had Temporal Arteitis for three months already and have not gone most likely I would not go blind. That was the frosting on the cake for me…..I wish that I could call Medicare and tell them what I thought regarding this office visit….I can only imagine what he will bill Medicare for, probably $700 to $800 and he even did notice that I had a CAT Scan of my head done…..I wish that I had never gone to see him. I am now thinking of going to a good Neurologist back in the Aurora Healthcare Network. This Specialist visit was a complete waste of time and money all around.

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Hi Tinkerbell, My SED RATE was 29 two weeks ago, which this RA doctor thought was not very high at all….he even said that 50 would not be considered bad for someone in my age, 69 years. Did your SED RATE increase rapidly from the first ready or did it gradually increase? I do not see any swelling whatsoever at this point in time, however, several days ago the pain seemed to migrate to my left outer ear and it was intermittent, one discomforting sharp pain every two minutes…Excedrin Migraine did not help this…It finally dissipated by the end of the day. I have had one or two days since this all began where everything seemed to clear up on its own but came back again the next day. I also feel a slight pulling on my left check and temple and eye area. There is some feeling also radiating down my left side of my neck with stiffness….not extreme though. I could not believe it when this RA doctor dismissed my concern for my vision after I requested him to write an order for a neurological eye exam by a doctor of optometry.

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@tinkerbell

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.

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@captainkenney – I have never had a rash and my husband said he was glad they never had to put me on Methotrexate. The Prednisone stops the adrenal cortex from producing cortisol and sometimes the adrenal cortex does not restart making cortisol when Prednisone is removed. I am down to 5 mg of Prednisone and am on a very slow taper. 1 mg a month.

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@charann2000 – my symptoms disappeared the evening they started me on 60 mg of Prednisone. My first Sed Rate was done at Mayo and 3 months later it was down to 4. Since the first Sed Rate, I usually run about 6 or 8. I noticed the tooth pain early on in the disease but it went away and never came back. The plastic surgeon that did the biopsy told me that when he pressed on the temporal artery and I felt pain, he was pretty sure the biopsy was going to come back positive. You are going through the same thing that I did, just getting someone to believe that you are in pain and that something is wrong. Have you been to your internist? He/she could order a Sed Rate. Do you have to have a referral to go for an eye exam?

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Tinkerbell, I have not been to an internist and the Neurologist that I would like to see is booked thru July 29th….so I may have to find another with a sooner appointment time. It seems like you lose a lot of valuable time just trying to get to see a specialist these days.

I think that I need a written referral for the type of eye exam (neuro eye exam) that is needed in this instance and still so mad at that RA Specialist forgot cooperating dismissing that and saying I could just go on my own for a routine eye exam….this is not routine….a special RX has to be written in order for the Eye Specialist to know what it is all about. One thing that I am seeing first hand is that when you become really ill, it is like jumping through hopes to get anything accomplished. I feel like calling Medicare and reporting him for incompetency and I still may do that!

So far, the ER did the best job of getting the blood work (almost 40 tests) and at least vitals, etc. done in a timely manner. My Sjogren's Syndrome A Blood Work came up very high, at 3.2 over the recommended highest rate of .0.9 and nothing about that was even mentioned yesterday and I also got a POSITIVE for my Antinuclear Antibodies Screening blood work. These three panels all came in high and should be flags to any competent physician.

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@tinkerbell

@charann2000 – my symptoms disappeared the evening they started me on 60 mg of Prednisone. My first Sed Rate was done at Mayo and 3 months later it was down to 4. Since the first Sed Rate, I usually run about 6 or 8. I noticed the tooth pain early on in the disease but it went away and never came back. The plastic surgeon that did the biopsy told me that when he pressed on the temporal artery and I felt pain, he was pretty sure the biopsy was going to come back positive. You are going through the same thing that I did, just getting someone to believe that you are in pain and that something is wrong. Have you been to your internist? He/she could order a Sed Rate. Do you have to have a referral to go for an eye exam?

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I am listening to your symptoms and your reaction. My teeth are falling out. I am dealing with so many more things than I originally suffered. I am totally giving up on these so called doctors. When will they realize we know more than they do about it bodies. Today I saw my eye doctor. Since my last fall my eyesight is going down hill. I was 20/20. Not anymore. I don't know.. I am trying..but with no pain help and daily new symptoms.. I have about had it. I am 76. Maybe this is as good as it gets. If I could get some relief, maybe we could allow our bodies to heal it's self.

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@charann2000

Tinkerbell, I have not been to an internist and the Neurologist that I would like to see is booked thru July 29th….so I may have to find another with a sooner appointment time. It seems like you lose a lot of valuable time just trying to get to see a specialist these days.

I think that I need a written referral for the type of eye exam (neuro eye exam) that is needed in this instance and still so mad at that RA Specialist forgot cooperating dismissing that and saying I could just go on my own for a routine eye exam….this is not routine….a special RX has to be written in order for the Eye Specialist to know what it is all about. One thing that I am seeing first hand is that when you become really ill, it is like jumping through hopes to get anything accomplished. I feel like calling Medicare and reporting him for incompetency and I still may do that!

So far, the ER did the best job of getting the blood work (almost 40 tests) and at least vitals, etc. done in a timely manner. My Sjogren's Syndrome A Blood Work came up very high, at 3.2 over the recommended highest rate of .0.9 and nothing about that was even mentioned yesterday and I also got a POSITIVE for my Antinuclear Antibodies Screening blood work. These three panels all came in high and should be flags to any competent physician.

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Charan…I so wish I knew if the doctors are trained as well as they were when I was young. Why should they even try? Think about it…they are threatened to loose their license if they really do their job. There is very little the doctors can do. Think about it. Now we can't get pain relief and most doctors who are good want to throw their education out the window. They can refer us to a specialist but so what,? What can the specialist do? No control on pain once again.

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