Adjusting to life with temporal arteritis

I'm glad to hear you're doing ok. Probably the Actemra and the prednisone are both helping you. I'm still taking Actemra injections weekly and 5 mg prednisone daily. I've been feeling really good since I tapered to 5 mg prednisone.

I was diagnosed with GCA in October. I was put on 80 mg prednisone at that time and am down to 20 mg now. Dr could not drop again at last visit because I was having symptoms. Head now is very sore as if in another flare. Do you up your prednisone or does the dr advise to increase when you have flare ups? I do not have rhuemotoligist but seeing a Neuro ophthalmologist. All info will be so appreciated.

I have GCA diagnosed January 2024. Been on Prednisolone and Methotrexate for over a year. Have been reducing Prednisolone gradually, down to 5mg. New scan of temporal arteries no change still activity.

Sorry to hear that you're having a flare. I have a rheumatologist, but I felt comfortable adjusting my dosage when I had a flare. I told her what I was going to do and she concurred. I have learned a lot in this forum and feel like I can take charge of my care. There's no 'standard' dosage. Everyone reacts differently.

Has your doctor ordered bloodwork to check your ESR and CRP (inflammatory markers)? I was diagnosed with PMR and possible GCA in July 2024. I started with 60 mg. of prednisone. I did the taper and when I got to 10 mg in November, I started getting more achy. In December, I was down to 8 mg and had a flare during the holidays. I started getting my GCA symptoms again. In the beginning of January, I requested that my rheumatologist order Actemra infusions for me. I didn't want to get on the 'taper/flare/increase prednisone dosage/taper...' roller coaster. (I had horrible side effects from the prednisone.) Started in mid-January and getting them every 4 weeks. I haven't felt better since last spring. Actemra is prescribed to treat GCA, but some doctors will prescribe for PMR, too. You might want to have this conversation with your doctors.

My numbers are never very high on blood work. I do not have PMR, just GCA. I woke up one morning and had partial vision loss . When I look back I had been having a lot of symptoms. Just never had heard of GCA. I do blood work once a month when I go to my doctor. I need to ask doctor if she wants me to up dosage when I feel like I have a flare. I am on 20 mg now and just hate to think of upping the dose bc effects are so bad. I started at 80 and down to 20 mg prednisone now. I will talk to her about Actemra. Thanks for your help.

I hate the side effects of Prednisone, too. Actemra has its own side effects. Pick your poison. I am more comfortable with taking my chances with the Actemra. I'm currently at 7 mg. day. My goal is 0 and I think it's acheivable. (A tip about Actemra-if you are on Medicare, Part B will pay for infusions. If you go with the self injection at home, you'll likely deal with a co-pay on your Part D.)

"There's no 'standard' dosage. Everyone reacts differently."
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Also, no single best way to taper off Prednisone. It is mostly the trial and error method despite elaborate tapering schemes and other recommendations.

Trial and error applies to Actemra to a certain extent but not like prednisone dosages and tapering. I was told that I wouldn't know if Actemra works until I tried it to see.

Just don't let anyone convince you that Prednisone is the "only option" and that prednisone side effects are "easy to manage" compared to the "serious" side effects from Actemra. Certainly not true in my case. Actemra worked well for me with no serious side effects and I was able to discontinue prednisone relatively fast. When I asked my rheumatologist if he knew if Actemra would work ... he said it was an "educated guess."

The other advantage of Actemra in my way of thinking -- it is easy to stop if it doesn't work or when you have side effects. This aspect is rarely mentioned when comparing it to Prednisone. To the contrary, prednisone is very difficult to stop after long term use. I can't underestimate the Prednisone side effects I had and they were NOT easy to manage.

I have GCA. I was diagnosed a year ago after having lost most of the vision in one of my eyes. I started on 80mg prednisone and have been tapering down - but I have occasional flares. My rheumatologist told me that if I start having symptoms I should go back up to the last dosage level where I did not have symptoms, and re-start the taper process from that point. I see him every 1-2 months, but he responds to my emails if I have a question about how to proceed. I’m also on Actemra and my ESR and CRP levels are always low. I’m at 10mg prednisone right now.

I'm curious if you've had flares, since being on Actemra. This is my fourth month. So far, so good. No flares.

I occasionally get pain in and around my ears, sometimes between my jaw and my ear. I assume they are flares and they go away when I up my prednisone. They seem to come on when I taper down. The lowest I’ve gotten is 5mg. If I weren’t on Actemra, I’m thinking they would be worse. I’ll have to discuss that with my rheumatologist.