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@elderdiana

PMR often coexists with GCA. I have not been able to find another person with GCA so I started reading the PMR comments. GCA stands for giant cell arteritis. Started 3 years ago with vision loss in right eye which returned in about 5 minutes and jaw pain while chewing. I was in Banner Boswell hospital and told it was not GCA but possibly migraine starting in eye but not going to brain and jaw was TMJ. I went to another hospital a few months later because blindness happening several times a week. They did a biopsy and confirmed GCA. Put on 60 mg prednisone for 3 months with methotrexate added after 6 weeks. Slowly reduced prednisone, down to 4 milligrams by last spring, still on methotrexate, when C reactive protein tests started climbing. Now my Doc wants me to go on Actemra,(tocilizumab) fusions once a month for life?? I would prefer to just up the prednisone. Any ideas, any body?

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Replies to "PMR often coexists with GCA. I have not been able to find another person with GCA..."

Hello @elderdiana
Welcome to Connect. There are two other discussions that you might want to join specifically talking about Giant Cell Arteritis (GCA). @beryl you might also want to join these discussions to meet others and see what they are doing for treatments:

Groups > Autoimmune Diseases > Temperol Arteritis or Giant Cell Arteritis
https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/?pg=1

Groups > Autoimmune Diseases > giant cell arteritis
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Groups > Stroke & Cerebrovascular Diseases > Adjusting to life with temporal arteritis
https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/

@elderdiana I would recommend dicussing your preference with your doctor to understand all the side effects for long term use of prednisone vs having the fusions once a month for life. None of us are medical professionals and not able to give advice other than sharing our own experiences. Do you have any reasons for wanting to just up the prednisone?

John

Hello @elderdiana

So sorry you had to go through all of that, before you were correctly diagnosed!

My husband John had some symptoms of GCA and he was sent right away to see an eye specialist. Thankfully, he doesn't have GCA, but I became a tad more informed about it; so I can tell you that IF my husband had been diagnosed with GCA, he would have been treated with 60 mg of Prednisone and Methotrexate as well. Our Rheumatologist did not address Actemra; so I don't have any information on it … sorry! But others may well had that experience, as @johnbishop mentioned in his post.

Let us know how you are and what you decide to do. D.

@elderdiana Hi Ive read John,s note on Prednisone Im a retired nurse and the side effect of it ,its hard on the kidneys so the Dr should only give you so many its usually tailored down from 5,4,3,2,1 a day thats a save level to be on but Dr can give you instructions.

Kind of you John to send my the ref. I will certainly join in and reads what others say…..
By the way did you get a heat pad and if you did does it help…..Beryl

Hi John. I am only on 3 mg now, so hopefully I can take a small increase. Also pages 24 through 31 regarding serious side effects in the booklet Actemra., concerns me due to my other medical problems. I feel great, never had any headach,etc. Three years ago, my right eye would go blind, then return to sight 5 min. Or so later. Also jaw discomfort while chewing. My primary care doc told me to go immediately to hosp. In sun city, Az. They did 2 days of testing, and said probably migraine headache starting in eye but not going to head, and jaw wasTMJ. They said was NOT temporal arteritis. Also that my ESR was only 47, and not that high for an old person. My primary doc said I should have had a biopsy and I went to a rummy doc who did some blood tests and ESR was 72 by then, and was sent to another hosp. Where the biopsy confirmed GCA. My vision problems started in August 2015 and got the right diagnosis in Dec. My eye doc said it was remarkable I was not blind. Last Halloween, I was at the Ritter Institute for back surgery. My surgeon said stay off that methotrexate until healed (8 weeks). I did and started having better blood reports. Wanted to stay off that methotrexate, but doc did not agree so still on 10 mg a week. Diana age 81.

@elderdiana – Have you thought about going to Mayo Clinic in Phoenix to get a second opinion? I read about Actemra and agree that I would not like to be on the drug for the rest of my life. It sounds like you are continuing your taper and feel great. The Mayo in Minnesota sees the most cases of GCA so the doctors in Phoenix would be able to get a lot of information from the Minnesota doctors. Many of the people in Minnesota are from the Scandinavian countries so they see a lot of GCA. I certainly understand your reluctance to go on the Actemra.

Thank you. Good idea. My rheumatologist says she has been dealing with this disease for years. This is the first time we are not in agreement, and I too think I need a second opinion,since she is so adamant. I have been seeing her for almost three years with blood tests every 6 weeks.

@elderdiana – Let us know once you get your second opinion.

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