After remission ... has anyone discontinued Actemra or Kevzara?

I also woke up blind one day in my right eye. Temporal biopsy was negative. C surgeon did not take a large enough sample of artery . Turned out I had GCA. Was on pred for ten mos. Gradually weaned off and. Now on Actemra. Very expensive

I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of prednisone. My taper got me down to 8 mg. the first of December. Pain returned and progressively got worse by mid-December. The beginning of January 2025, I increased my prednisone to 13 mg. I had my first Actemra infusion this week (Jan. 22). Other than a mild headache for a couple of days after, it went well. Two days after the infusion I woke up with the least amount of pain that I had experienced in 2 months. I let my rheumatologist know how I was doing and she said that I could start tapering down again. I was going to start my taper today, but awoke with a little more joint aches. I am going to hold off on beginning my taper, until I can discuss again with my rheumatologist. I am curious how others have managed/began their prednisone tapers after starting Actemra. Did you wait until you were completely pain-free before you began the taper? This is a great group with a lot of experience with PMR/GCA. I appreciate your insight and comments.

Actemra works well for PMR/GCA. What it doesn’t help with is adrenal insufficiency. My cortisol level was checked at about 3 mg of prednisone. My cortisol level was low so I needed to stay on 3 mg of prednisone for about 6 months. After 6 months I was told that I could safely discontinue prednisone after my cortisol level improved.

It is hard to distinguish the aches and pains caused by adrenal insufficiency and prednisone withdrawal from PMR. Much of this depends on how long you have taken prednisone.

I think Actemra indirectly helps adrenal insufficiency because I don’t think I would have ever stayed on 3 mg without Actemra.

I was diagnosed with GCA in late June 2024. I had undiagnosed PMR for about a year before that. Like you I started on 60 mg prednisone, and stayed there for 6 weeks. I've been completely pain free since I first started taking prednisone. I started injecting with Actemra weekly around the first of September. I think I was at 50 or 55 mg prednisone then. I'm at 10 mg pred now, and in a week I will start tapering 1 mg every 2 weeks until I get down to 5. I'm feeling a lot better as the prednisone dose comes down, especially when it got to 10.

I've read that it can take up to 2 months to really feel the benefit of Actemra. One website I just checked said it can take up to 14 weeks to reach a consistent level in your body.

Thanks for your reply. I'm glad that your taper is working and you are pain-free. When I got down to 10 mg. I started noticing some aches and pains, but I just pushed through them. Sounds like you were pain-free when you started Actemra. My current flare started in mid-December right before the holidays. I'm reluctant to continue my taper from 13.0 mg. pred. until my pain subsides. There were times during the past month, that I was in pain all day. Another bonus with taking the increased dosage of Prednisone is that in jacks up my blood sugar. Prior to PMR/GCA, I never had any blood sugar issues. I get daily headaches with the blood sugar spikes. I'll discuss my taper with my rheumatologist this coming week.

I will patiently wait to see how the infusions work for me. I am hopeful for the future that I will be on a low dose of Prednisone and be pain free.

I hope things go well for you.

Once diagnosed with GCA primary, I was put on 50 mg of prednisone. I was not able to get below 15 mg side effects. I started the actemra. After the second dose, the doctor tried lowering me to 12 1/2 mg but the headaches were constant. I went back to 15 mg and after my second infusion tried 14 mg. I’ve still had breakthrough headaches but discussed with my doctor using Tylenol rather than increasing the prednisone again. I will see my rheumatologist again on Friday and further discuss trying to lower the prednisone to 13 mg. I want to try to get off or lower to a much smaller dose. The prednisone since the side effects are not pleasant. I just had my third infusion, keeping my fingers crossed.

Apologize if this recent story is a tad lengthy but you might glean some useful bit from it.
Jacob

PFIZER COVID-19 Vaccine and Rheumatoid Arthritis Onset (2021 through 2025)

Any evidence so far linking COVID-19 Vaccine and Rheumatoid Arthritis (RA) ? In March/2021 I started the PFIZER COVID-19 vaccine followed by boosters in June/2021, December/2021, June/2022 and November/2022. No unusual side effects, but in May/2022 I developed increasingly acute inflammatory pain in shoulders, neck and hips. Various visits to Emerg with shoulder and neck ultrasound and CT scans through the end of 2022 were inconclusive.

In May/2023, I was formally diagnosed with Rheumatoid Arthritis (RA) and began different immunosuppressive medication plans, starting with Predisone and Alendronate, then Leflunomide, then Methotrextate (MTX) , then Actemra with no Leflunomide. Actemra was eventually successful in managing the inflammatory pain but with nasty side-effects, especially wooziness and balance issues.

In September/2024, the medication plan discontinued Actemra, leaving only Folic Acid and weekly MTX injections. Minor Inflammatory pain returned but was manageable with extra strength Tylenol and after 4 months, the wooziness and balance issues essentially disappeared. My rheumatologist expects to reduce the MTX dosage by 50% starting in September/2025 and MTX discontinuance at some future point.