Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

everyone is so wonderful and supportive of these horrible diseases. i plan to write my story and hope everyone does too. i kinda get it all now, not great but better to understand more. it's taken a long time. i hope we help each other

It might be an adrenal problem rather than a problem with Actemra. I successfully tapered off Prednisone after Actemra was started. I had adrenal insufficiency that caused some of my problems with tapering off prednisone. Warning -- it is a long story so stop here if you aren't interested.

My experience was similar to your experience. I tapered my prednisone dose by 1 mg per month from 10 mg to 7 mg. I had no idea if Actemra was working or not. All I knew was I didn't have a flare at 7 mg of prednisone which was unusual because that is where my symptoms would always return. I wasn't symptom free but I didn't have a flare such that I had to go back to 10 mg.

I was discouraged so my thought was I would get the "inevitable flare" over with. I tapered by 1 mg per week for the next 4 weeks. My pain symptoms didn't get worse but I felt miserable because of overwhelming fatigue. I can't exactly describe how I felt because I was in uncharted waters on 3 mg of prednisone. I wasn't sure what to do except for being told by an endocrinologist that I should come back to see her if I ever reached 3 mg of prednisone.

I described my symptoms to my rheumatologist and he checked my a.m. cortisol level. My cortisol level was low so I was told in no uncertain terms that I shouldn't taper any lower than 3 mg. My rheumatologist referred me to an endocrinologist except the next opening was several months away.

In total, I was on 3 mg of prednisone for about 6 months until I was seen by an endocrinologist. We discussed my long term (12 years) of prednisone use for PMR. My endocrinologist was encouraged that I still had a cortisol level after 12 years on prednisone. We had a long discussion about stopping prednisone. My endocrinolgist said she didn't know what would happen if prednisone was stopped. She thought prednisone could be safely stopped because my cortisol level was "adequate." If I stopped prednisone , she stipulated that I could go back on prednisone again for any reason "if I felt the need." She also said 3 mg was such a low dose that tapering wasn't needed but I could if I wished.

I elected to try to get off Prednisone so I did a fast taper to zero. Things didn't go well the first time I tried to taper off prednisone. I will spare you all the details but I soon had a need for 60 mg of prednisone again. The problem wasn't PMR or GCA but something else entirely. I was devastated and I didn't think I would ever get off prednisone.

What followed was a year of "adjustments" to my treatment plan. Actemra was stopped for a few months while and a different biologic called Humira was tried. Humira didn't work well when PMR pain returned and I was stuck on 15 mg of prednisone again.

My rheumatologist gave me the choice of trying Acterma again or staying on Humira or prednisone. There was no way I wanted to stay on prednisone for the rest of my life. I tried Actemra a second time and tapered off prednisone again. The second time, I went from 15 mg to zero in 3 months.

I currently do monthly Actemra infusions instead of the injections. I have been off prednisone for the past 3 years with no symptoms of PMR/GCA. My quality of life has improved since getting off prednisone. My life isn't completely pain free but all my prednisone side effects are improving or have resolved.

Nice message. Yes it is aggravating but not debilitating to have this condition. I only have temporal Arteritis thank goodness and not GCA. Been on prednisone foe several years . So glad it s something that can be treated.

I'm new here. Just or in 60mg prednisone as a result of swollen temporal artery and history of headaches/ migraines. Blood test showed elevated c- reactive protein. Waiting for more tests to be done. To get a reactive diagnosis of temporal arthritis. My question is are not this and GCA the same thing? It sounds like it isn't from these comments

I never heard of temporal arteritis either when I was diagnosed. However it’s not some weird mysterious disease doctors don’t know about. My doc quickly diagnosed it and confirmed with a biopsy; my rheumatologist treats giant cell arteritis on a regular basis. Trust your doctors.

What type of doctor specializes in temporal arthritis? A neurologist or a rheumatologist?

Sorry for my spelling errors. Not sure how to edit them

Still bruising...bruised are larger but not bleeding as easily as before. Headache and neck ache haven't gone away. Dr. Says blood work is normal.

Hi I'm new here so not sure where to post a comment. So I'll do it here since have some of the symptoms I've had for quite awhile is frequent headaches/ and migraines for at least 2 years and was getting progressively worse. Never lost any eyesight, but have a swollen temporal artery just noticed a few days ago. So went in to clinic, they did a blood test for c- reactive protein. And was elevated. So put on prednisone 60 mg. Is it possible to have this and not have loss of eyesight and other symptoms? I'm confused, it sounds like for most people symptoms come on suddenly? With me, I think my symptoms were gradual over a couple years. But was getting worse. I have memory issues and brain fog really bad. So it's hard to put together when all my symptoms started. I seem to have most of my issues on my right side of my face, that's where most of my headaches stem, plus tinnitus and sudden hearing loss. Fatigue is really bad and shortness of breath. I'm just trying to figure this all out. Been going to the doctor quite often looking for answers the last 2 years. Had stress tests for heart issues, pain all over. At times, the pain seems to travel and affect other areas. Have ankylosing spondylitis. So many of these symptoms seem to overlap. But it's autoimmune in guessing.