Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

@Mary Lou have a speedy recovery be patient.

Thanks, Tinkerbell, I surely will keep you posted as things continue to unfold. In the meantime Happy Fourth of July to everyone!

Fighting this thing for three years. On 60 mg of prednisone for 3 months with methotrexate added after first 6 weeks. Slowly reducing prednisone, got down to 4 mg by last spring. Then c reactive protein test and sed rate started climbing. I feel fine. My Doc wants me to start monthly infusions ofActemra (toncilizumab for life??? I would prefer to add more prednisone if necessary. Any thoughts, any one.

Hi, @elderdiana,
I wanted to let you know I've moved your post on giant cell arteritis here so that you could meet some other members familiar with it and already discussing the disorder. Here you can talk with @charann2000 @tinkerbell @lofa @captainkenny @robynann and others. Hoping they will have some thoughts to share on adding more prednisone vs. monthly infusions of tocilizumab (Actemra).

@elderdiana - wondered if you would share about any concerns you have related to the tocilizumab (Actemra)?

Hi elderdiana - My husband has been doing some research and the answer to your question about corticosteroid depends on the working condition of your adrenal cortex and H-P-A axis. You really need to know if your H-P-A axis is working. There are simple test you can take that will show this.

Is this something that he dr orders ?

Hi Tinkerbell and all the other Temporal Arteritis patients. Just wanted to let everyone know that I cancelled the appointment that I had scheduled for August 23rd this week with another RA Specialist whom handles Temporal Arteritis. I have not been experiencing any further pain in the temporal area or behind the left eye....Thank God! I decided to cancel for several reasons and was told if I should have any of the systems start up again they would get me in super fast.

The reason I cancelled, ironically, was that the new RA's Medical Assistant called me about one week prior to the actual appointment and during the course of our conversation, I realized several things: 1). I would be giving a complete history again (this time a one hour appointment as opposed to 15-20 minutes which the prior RA doctor spent (and that was a big disappointment insofar as the doctor. I felt that all the new RA doctor could do or tell me was to have some more of same blood work done and I already had a favorable CAT Scan of the head with contrast; 2. aside from that and with no presence of symptoms for the past several months, plus having the traumatic accident with my leg at the end of May (accident in my own home, 13 stitches), I did not feel like I wanted to be poked for a blood draw, and get involved with the medical world so soon again; 3 I also felt at this point in time it would be unfair to Medicare to go through this again insofar as paying for the same thing in such a short period of time. Lastly, this Medical Assistant was great until the end of the conversation which was lengthy, she seemed to understand my view points and then she said, " well if you come into the office, the doctor will be able to prescribe you Prednisone as a precautionary maintenance drug!!! With that said by the MA, I knew she should never have volunteered that and I did not need it. You are only to be given Prednisone if your condition warrants it and not if you are feeling fine....this statement spoke volumes to me. One she is not the doctor and two she was desperate to get me to fulfill my appointment although they can easily fill it since there is a three month wait to see this doctor and his reviews are fine. With all of this said and my feeling fine, I don't regret cancelling the appointment. I am not saying that this situation may flair up in the future, but for right now, I will settle for just feeling fine and be thankful. If the situation changes, I will post again. In the meantime, I hope that everyone out there gets the CORRECT TREATMENT and begins to feel better if they do in fact have Temporal Arteritis . But if you are receiving any drug treatments, do some research and if you feel it is causing other problems or unnecessary, challenge your doctor., if he or she does not care for that, find yourself a new doctor....you are and will always be your own best doctor and/or advocate!

If I were you, I would reconsider your decision. My giant cell arteries had no symptoms but was very much present. It was found during heart surgery. My best advice would be to go to Mayo Clinic and make sure you are okay. Even my blood tests were normal but still I had the disease. With temporal arteritis, one significant danger is blindness. I certainly am no doctor but the above is what I have been told at Mayo. in the meantime best of luck to you now and in the future.

@charann2000 - Good to hear from you and so happy that you have not had any further symptoms. Sorry to hear you had an accident at home and had to have stitches. Take care of yourself and stay healthy. I am down to 2mg now and hoping to be off of the Prednisone by mid-October. I had an ACTH Stimulation test at 5 mg and it showed my adrenal gland was working. I can’t wait to get off of the Prednisone. Because of some problems going from 7 to 6 mg. I decided to go back to 6 1/2. I am now going down 1/2 mg. Every 2 weeks. At Mayo they told me to go to 1/2 mg every month if I have any further problems.

Thanks, Tinkerbell, likewise I am happy to hear that your are waning off of Prednisone....mid-October is not that far off...hope that you never have to go back on it again and that you will be somewhat cured. I walked into the the very corner of my fireplace hearth (concrete) with blue jean leggings on and thought I would just have a very bad bruise as the leggings were not torn nor snagged. Looked down at my foot and saw blood dripping down and still thought it was only a surface scratch until I rolled my leggings up and then almost fell over with what I saw....YIKES....It looked like my leg was lacerated about five inches across and such a wide separation. Lucky I was not home alone and my sister dressed & wrapped it up or I would have had to call 911. Sis took me to the ER and I was fortunate to get a very good PA who had a lot of experience with stitches....It took 13 stitches but it healed nicely. So thankful for that and it was a ThedaCare ER up in Northern Wi where I have a home on a lake....somewhat rural but a beautiful naturally forested area.