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Trying To get Answers About GCA
Autoimmune Diseases | Last Active: 17 hours ago | Replies (14)Comment receiving replies
@jeff97 @shoregirljill I contacted the Rheumatology Clinic where I have my appointment and they are booked out until August 2026. I have my March 2026 appointment so that is a good thing. I am on their cancellation list and have been since November 2025 when I initially made my appointment but from what I am able to figure out it is a small clinic. Also, my PCP does not have many options for Rheumatologists to select from so he is doing the best he can. Hopefully I will get a cancellation but I do have an appointment and it is getting closer.
@jeff97 I think my Ophthalmologist is finally on the right track with my medications. On Tuesday I started on high dose Prednisone 60Mg a day for 7 days then 50Mg a day for 7 days then 40Mg a day for 7 days leveling off at 30Mg a day thereafter. I am also taking Methotrexate 15Mg once a week for 4 weeks as well as Folic Acid. Hopefully this will help.
I will say that I have been dealing my vision lose started but with this high dose Prednisone the blur and haze have been an absolute beast, I know a side effect of Prednisone is blurred vision but WOW! Hopefully better things are around the corner.
@shoregirljill you say you came off of the Actemra. You said you had a wound on your leg that wouldn't close. You mentioned that you have a bleeding disorder? was that caused by the Actemra or have you dealt with that for a while? For me I am concerned about the Methotrexate because I am reading that it can cause trouble with wounds and clotting and I don't want to get in a situation where I get a cut and can't stop the bleeding. I have a couple of Dentist appointments coming up and I may wait until I am off of the Methotrexate to make them. Your thoughts are appreciated.
Thanks everyone for all of your help.
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@alandy233 I hope you can get an earlier appointment with the rheumatologist.
Your prednisone taper seems really fast to me. After receiving the 3 daily infusions of steroids, I started at 60 mg per day. I stayed at that level for 6 weeks. Then I tapered 5 mg every 2 weeks down to 20. So I stayed at 55 for 2 weeks, 50 for 2 weeks, etc. When I got down to 20, I stayed there for 4 weeks, then 2.5 mg every 2 weeks down to 10. Then I stayed at 10 for 4 weeks. Then I dropped 1 mg every 2 weeks down to 5, and then 1 mg every 4 weeks down to 0. It took me 16 weeks to get from 60 mg down to 30. Your plan will get you there in 3 weeks. That's a big difference!
My taper was fairly slow for someone who is taking Actemra, but my doctor was conservative because of the vision problems I had when I was diagnosed. I would be concerned about having another flare at the rate you're tapering. Maybe you could ask for a slower taper, such as 4 weeks at 60, 2 weeks at 50, and 2 weeks at 40? That would get you close to your appointment with the rheumatologist, and the rheumatologist could decide what to do next.
Being at the high doses of prednisone was difficult for me because of side effects, but it worked out because I never had any symptoms or flares.
I had some mild problems with my vision at high doses of prednisone. It seemed like my eyes were slow to adjust when I went from a well lit room to a darker one. Plus I had some problems with dry eyes. But those problems faded away as I tapered the prednisone.