Currently on week 41 of Prednisone. Initially started on 15mg for PMR. Rheumy wouldn't listen to me and only pushed for me to be below 7.5mg wanting to add MTX which I wanted nothing to do with. Any taper below 10mg flared my symptoms. As my headaches continued to worsen I was fairly certain I had GCA. Dropped him as we weren't a good mix. New doc agreed I had GCA. Didn't feel it was necessary to raise my dose. Started on Actemra infusions once a month. Due for my third this week. Have been doing great with minimal headaches and just mild neck discomfort. Have been able to reduce my Pred to 6.5 mg daily and continue to taper decreasing .5mg every 2 weeks. Curious as to what others have used for tapering plans once on Actemra? I searched but couldn't find taper with Actemra.
Thanks in advance. Happy Holidays
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THClover
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and you can download the study document from the paper.
However, the tapering of infusions is less clear since they weren't used in the clinical trial at all. just the injections. Outside the USA, injections are used on a weekly basis.
The other thing that concerns me is that some doctors start tapering steroids as soon as the Actemra is started - when you are at a really high dose of pred that is probably fine. But my rheumy was keen I should wait at least a month after starting Actemra to allow its effect to be built up before taking the pred away.
I guess I was fortunate with Actemra as I began obtaining relief of symptoms within days of the infusion. I appreciate receiving the studies you attached. As I am transitioning to self administered pokes in 2025 it kind of supports my plan. I do plan on going slightly slower with 0.5 mg reductions. Thanks
I am in the US. Once I was on the monthly infusions my doctor had me get off prednisone pretty quickly. I went from 40mg to 0 in 7 months. In fact, he wanted me off in 4 months. I sort of did my own thing because I felt his idea was too quick. When I went to see him after 4 months he was surprised I was still on 5 mg. I told him I was afraid to go faster. He said ok and to do what I wanted. 3 months later I was off. I was happy to be off of pred so quickly. The only problem I had was my body hurt everywhere. I stuck it out using Tylenol and eventually the pains went away.
hi THClover - I had to get off prednisone due to side effects and once on monthly Actemra infusions I did successfully decrease the prednisone - but slowly. Then 2 years of Actemra which I only went off due to a one time only episode of AFib. At that point I asked the rheumatologist if I could try being off it. My blood work looked ok and I felt ok except for the side effects of Actemra like nausea (pregnancy level nausea). He reluctantly agreed. That was ten months ago. I have twice gone on prednisone for about a week due to the feeling of a flare (headache and jaw pain) but have done so on my own accord. I also have PMR which the Actemra did not help - it is only helped by prednisolone so I feel I just have to live with it. Hope I was helpful. Sue
"I also have PMR which the Actemra did not help - it is only helped by prednisolone so I feel I just have to live with it."
Actemra DOES also work for PMR - I can say that with confidence as I have PMR and am on Actemra to reduce my pred dose from 19mg to 7mg. However, I can only get to 7mg as below that the bicep problems that are part of my PMR return. It doesn't work 100% for all patients in either GCA or PMR: there are at least 3 different mechanisms that cause the inflammation in GCA and PMR and Actemra only works for one of them. If your GCA or PMR involves the others, then you continue to need some pred to manage that and that is the case for about half of patients.
I'm surprised you stopped Actemra because of a single episode of atrial fibrillation. I already had paroxysmal a/fib when I started Actemra and it had no effect on it at all.
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