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

Hello @mahernm, happy Veteran's Day as of tomorrow (November 11th, 2023).

You may notice, I moved your discussion and combined it with an existing discussion titled: "Actemra (tocilizumab) to treat PMR?" - https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/.

I did this so you could meet other members talking about actemra and PMR. @ @dadcue, @dontknowitall53, @marid57, and @normank have all shared their experiences with actemra or their questions regarding starting actemra and may be able to share some updates and insights with you.

@mahernm, you mentioned you have had two doses but have not noticed any results yet. Did your provider discuss when you may notice results if there were any?

I have just started Actemra in conjunction with 6mg of prednisone for GCA. I previously had PMR about 8 years ago and was declared OK after about 2 years on prednisone. I had been warned about GCA but forgot about it until last year 2022 when I suddenly developed jaw claudication and then double vision and severe pain in right eye. So now 15 months later on my journey with GCA.
My rheumatologist went for Actemra because my CRP AND ESR keep spiking. Early days and hoping for stabilisation of "bloods".

Any side effects from Actemra? I've read one is suspectable to infections,some life- threatening.

For what it is worth ... I experienced infections while on prednisone. Most of my infections happened when prednisone was combined with a DMARD such as methotrexate or leflunomide.

When I was taking prednisone and leflunomide, I had three infections in succession with 3-4 months between infections. The infections required antibiotics.

I was able to taper to a lower dose of prednisone while on leflunomide so my rheumatologist wanted me to stay on leflunomide. The infections weren't too serious until the third infection caused a massive amount of pain. The infection itself wasn't overly painful. The pain was a flare of some kind if it wasn't entirely a PMR flare.

I was given another round of antibiotics to treat an abscess with the hope that the pain would improve after the abscess was treated. The pain didn't improve. I ended up taking 60 mg of prednisone before the pain improved. Leflunomide was stopped "due to infections."

I had a discussion with my rheumatologist about the infections. She didn't blame prednisone or leflunomide. She said the infections were caused by too much immunosuppression because of the combination of both prednisone and leflunomide.

Currently, my only treatmen is Actemra. I was able to taper off prednisone three years ago. On "standalone" treatment with Actemra, I haven't had any infections ...not even Covid.

Thanks for this. I'm deciding between pred and Actemra for large vessel vasculitis.

I took prednisone daily for 12 years. I "acquired" other heath conditions that were treated with additional medications. Ten medications in addition to prednisone were the most medications prescribed to me.

After Actemra was initiated, I was off prednisone a year later. Being off prednisone has allowed me to discontinue other medications. I'm now taking Actemra with only two other prescribed medications.

I have had 15 treatments of ACTEMRA for GCA (I also have PMR) but wanted to know if anyone is having difficulty tapering prednisone. I'm currently at 9mg, but have hight cholesteral, tryglicerides and fatigure. I also had a major relapse a few months ago and had to start all over again. I'm wondering if the side effects are worth it and if it's really working. Why did I have a relapse if it is. I'm also very afraid of the potential side effects. My Rheumy thinks it is working and is better then prednisone. He's offered to refer me to Mayo but I'm sure that will be months to get in if at all. I'm wondering if anyone being treated at mayo has been using ACTEMRA for GCA. I'm starting to lose hope as I was diagnosed with PMR in May 2022 and GCA Sept 2022. Thanks for listening

Hi Krueg, I was diagnosed with GCA and PMR in 2017. I was on 60-80mg of Pred for 8 months and then switched to Actemra. I went in the hospital once and my Rheum thought I had a relapse even thought the blood tests pointed to dehydration. I stayed on Actemra until Nov of 2021 when I was finally cleared. I have been clean since. Both meds have their pro's and con's. Pred makes you feel like Superman...until you come down. It also eats away at your bones. Actemra weakens your immune system so you become suseptible to other diseases and cancer. Coming off Pred I had pretty severe episodes of fatigue. I would just sleep most of the day. Unfortunately its one devil or the other.

That's what I'm afraid of with actemra is what's going to happen a few years from now. It's very scary. Thanks for sharing your experience and I'm so happy for you that you are in remission 👍

I had difficulty coming off prednisone after starting Actemra. It took me an entire year to taper from 10 mg to zero while doing Actemra injections. I had to persevere with Actemra but eventually I succeeded. I have now been off prednisone for 3 years but I still experience mild relapses when Actemra is stopped. I currently do monthly infusions of Actemra.

I experienced overwhelming fatigue while I was trying to taper off prednisone. My cortisol level was checked when I reached 3 mg of prednisone. A low cortisol level was indicative of adrenal insufficiency as a side effect of 12 years of prednisone use.

Symptoms of adrenal insufficiency can be very similar to PMR symptoms because of muscle and joint pain. Adrenal insufficiency can also cause dehydration secondary to nausea, vomiting and diarrhea. Overall, the symptoms of adrenal insufficiency make you feel extremely ill. The treatment for adrenal insufficiency is more prednisone which improves the symptoms. Since prednisone made me feel better, I mistakenly thought my symptoms were caused by PMR.

I had to persevere by continuing a very slow taper of prednisone. I was referred to an endocrinologist who helped me understand and overcome adrenal insufficiency. In any case, I never would have been able to taper off prednisone without Actemra. I felt worse before things started to improve but it took a long time.

The first time I tapered off prednisone while doing Actemra injections I had a flare. I needed 60 mg of prednisone again but I quickly got back to a lower dose. Cortisol regulates inflammation and mediates the body's stress response. I think my flare was caused by adrenal insufficiency and a low cortisol level.

https://www.healthdirect.gov.au/the-role-of-cortisol-in-the-body
It wasn't easy to taper off prednisone even with Actemra. Since I was on prednisone for 12 years, my endocrinologist wasn't so optimistic that I would be able to taper off prednisone but I did.

"Cortisol is the major glucocorticoid in humans. It has two primary actions: it stimulates gluconeogenesis—the breakdown of protein and fat to provide metabolites that can be converted to glucose in the liver—and it activates anti-stress and anti-inflammatory pathways."

My rheumatologist thinks my being on Actemra is better that being on prednisone for the rest of my life. I like being in remission.

Actemra does have side effects and risks involved. My rheumatologist monitors those things closely. The nice thing about Actemra is it doesn't cause adrenal insufficiency so there is no need to taper off Actemra slowly. Your PMR/GCA symptoms may gradually return when Actemra is stopped. You might need some prednisone but not forever if Actemra is restarted again.

I feel much better being off prednisone. Someday I hope to be off Actemra too. Try not to ever lose hope! My only worry now is about the possibility that Actemra might stop working but that is another topic for future discussion.