Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

I was diagnosed with PMR in May 2016 & didn't want to take a corticosteroid like predisone or methylprednisolone. I wanted to take Actemra & read the Phase I trials which indicated it's preliminary successes in treating PMR (as well as GCA). However, finding a physician that would prescribe it was difficult. In the USA trial, Dr. Robert Spiera at HSS was the sponsor, so I went to him in July 2016. Initially, he wouldn't give me an Actemra prescription. He insisted that I do a very aggressive taper off the methylprednisolone, and of course the PMR returned. Then, without telling me, his first Actemra prescription was only for half the therapeutic dose. When I found out that I was taking only a half dose, I was furious. After taking the full half dose course, the PMR returned & only then, did he prescribe the full dose course that was used in the trials. After I had finished the full dose course of Actemra, the PMR disappear, however (1) year later I had a flare, and took another course of Actemra & have been in good health since then. In 2016-2017) my insurance didn't cover the drug & I had to pay cash for it, but Dr. Spiera sent in the 'prior authorization' paperwork, which knocked off about 1/3 of the price. I gave myself the injections at home. Actemra is clinically more efficient, in that it blocks the IL-6 receptors, whereas all oral corticosteroids do is is suppress the adrenal glands, lowering the cortisol level circulating in your body. Plus predisone/methylprednisolone is very deterimental to your body, depleting bone density mass and can damage tendons & ligaments. Hope this helps.

I have have difficulty decreasing prednisone. As soon as I get below 10, my symptoms increase. I have tried Methotrexate and Leflunomide. The later has given me dizzy spells in the morning. My doc is now working on getting authorization for Actemra. I'm wondering what others have experienced. Thanks so much.

I have been on Actemra for 7 weeks. I started Actemra with an accompanying dose of Prednisone at 30 mg. Which tapers each week. I had no pain with the prednisone (but the side effects of prednisone were brutal) so I was looking forward to the tapering of prednisone. I am now at 10 mg of Prednisone and a weekly Actemra injection. Unfortunately, I’m feeling some of the PMR pains again. I’ve read where many have had great success with Actemra, but I’m thinking I’m not one of them. I’m going to tough it out a few more days and if things don’t get better, I’ll be back to my rheumatologist.

Maybe you’re tapering too quickly. The multiple times that I had taken prednisone had extended tapering times much longer than what you’re describing. I tapered over at least an 8-10 month period.

I was taking prednisone daily for 13 years before Actemra was tried. It takes time for Actemra to start working. I would say at least 3 months for me to start to feel a difference.

I tapered by 1 mg per month for the first 3 months. After that, I could taper more quickly only down to 3 mg of prednisone. My rheumatologist didn't want me to taper any lower than 3 mg until I saw an endocrinologist because of adrenal insufficiency (low cortisol level). The adrenals need time to recover from being suppressed by prednisone. The symptoms of adrenal insufficiency are extreme fatigue and you can also have aches and pains similar to PMR symptoms. It took a few more months before my adrenals were producing enough cortisol. An endocrinologist gave me the green light to discontinue prednisone when my cortisol level was adequate.

I'm still doing Actemra injections every 10 days to treat PMR and some other autoimmune problems. I have been off prednisone for more that 2 years. I haven't been able to discontinue Actemra.

Would like to hear any comments on actemra for PMR. Last year I was also diagnosed with GCA and took it for a while but now just on prednisone

I was originally diagnosed with PMR over 2 years ago. I went on a 10 month prednisone taper, but as I reduced the dosage, a milder version of the original symptoms returned along with temporal headaches and jaw discomfort. Yes, I was then diagnosed with GCA, was put on another prednisone taper, and started monthly infusions of Actemra. I no longer take prednisone but yesterday I received my 15th infusion. Later this month I have an appointment with my rheumatologist and my questions will be about tapering off or reducing the dose of Actemra. I would like to know if anyone else out there has experience with stopping the Actemra infusions for GCA.

Went on Actemra three months ago. Began to work after month two. Basically free of PMR pain. On only 1 mg of prednisone after 4 years on it. Hope to get off totally very soon.

Hi Linda
How many mg of prednisone were you on when you started actemra? I have been on it for 2 months with 10mg of predisone.
Thanks

Hi,
I started on 20 mg four years ago. Tried to taper off twice and failed. Starting tapering from a dose of 10 mg this time last year. Held at 2 mg for several months and felt horrible with a lot of pain. Went on Actemra three months ago and tapered to 1 mg. I see my rheumatologist in a week and am hoping to get off!!!
Actemra is a wonder drug for me!!! I still experience lots of fatigue but wonder how much of that is due to long Covid. But being pain free is wonderful!!! I just worry about long term effects.
Best wishes to you!