Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

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.

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.

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.

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.

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.

@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?

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.