Is Actemra (tocilizumab) for GCA worth the side effects?

@gertrudedallas I was diagnosed with PMR/GCA in July 2024. The megadose (60 mg) of Prednisone that I was initially on for 6 weeks, pretty much took care of my GCA symptoms. From August 2024 to December 2024, my tapering was going well. However, I was suffering from multiple side effects from the Prednisone, the worst being high blood sugar. It turned me into a diabetic. Also, it increased my cholesterol. In December 2024, I got to 10 mg/day and had a flare. My GCA symptoms returned. I asked my rheumatologist to prescribe Actemra infusions for me. I started them in Jan. 2025. I had a nice easy taper to the beginning of November 2025, when I was totally done with Prednisone. The only side effects from Actemra that I have experienced, is a compromised immune system. I used to never get sick, but I got Covid for the first time in July 2025 and a pretty bad respiratory infection in October. Both illnesses took me almost a month to get over.

Actemra gave my life back to me. I was able to resume the activities that I love. Golf, pickleball, bike riding, camping, and traveling. I don't think I would have been able to taper off of the Prednisone, so easily.

I picked my poison, and I chose Actemra over Prednisone. I'd do it again in a heartbeat.

@ropnrose

I'm just wondering if your infusion dose of Actemra or the time interval between infusions ever changes. I haven't had any infections or side effects from Actemra so everything stays relatively constant. My rheumatologist has made some adjustments to my dose and infusion schedule to accommodate travel , holidays and various things like that. I'm on an every 4 week infusion schedule but I have gone as long as 7 weeks. My inflammation markers were increasing at 7 weeks so my rheumatologist says I shouldn't go any longer than 6 weeks between infusions.

My actual infusion dose was easy to adjust too. I was on the highest dose recommended based on my weight which was 8 mg per kg. However, now I'm getting 4 mg per kg which is the minimum recommended dose. What I'm trying to say is that your Actemra infusion dose can be adjusted up or down as needed.

For patients receiving Actemra intravenous, you can get anywhere between 4 mg per kg and 8 mg per kg as clinically appropriate. My rheumatologist doesn't plan on ever stopping Actemra as long as it continues to work for me and it keeps me off Prednisone . I have been on Actemra for 7 years and completely off Prednisone for 5 years.

The following link discusses how both the dose and the interval of Actemra infusions are adjusted for RA patients.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4999578/

@dadcue Due to my WBC continually getting lower and my respiratory infections, my rheumatologist just lowered my dosage. I was on 6 mg/kg. I just had my first lowered dose of 4 mg/kg. last Tuesday. My infusions are every 4 weeks. Before this, he talked about starting my 'taper' in Jan. 2027. Looks like I just started my taper. Hopefully, my WBC will improve, as well as my immunity.

I've never been completely pain-free. I took my last dose of Prednisone the first week of November, about the same time as my November infusion. The time between that infusion and my December infusion, my pain increased. Knees, hips, shoulders. After my infusion, it improved a bit. Are you pain-free?

@ropnrose

I'm not 100% pain free. I have multiple conditions which all "contribute" a certain amount of pain to my overall pain. PMR contributed the major share of my pain but certainly didn't cause all my pain.

Actemra was targeting PMR and my rheumatologist doesn't think PMR is active anymore and is optimally treated. Actemra might stop working sometime in the future so PMR might return. PMR seems to return when I don't do my Actemra infusions at least every 6 weeks but every 4 weeks is better. I'm at the lowest dose (4 mg/kg) but my dose can be increased if necessary.

As for some of my other conditions -- Actemra is NOT "optimal" treatment but it helps. The rest of my pain is tolerable. I don't think being 100% pain free is possible anymore. My rheumatologist wants to address some of the other pain issues but I don't think I need anything else for pain relief.

@trina24 I have been on Actemra for 6 months and already it has started to attack my liver. My doctor lowered the mg from 6g to 4mg and now the pain has returned inside my head again. The doctor said previously that I would be on Actemra for 2 years. I am now wondering if I will be able to make that. I was diagnosed with GCA in May of this year. Previous to that I had PMR for 1 1/2 years and then 6 months of remission when I was hit again with GCA. I was on prednisone with the PMR for 1 1/2 years and with GCA for 6 months as a result of the prednisone I have been diagnosed with Glaucoma a few weeks ago. I hope you fair better than me on the prednisone and Actemra.

Everyone is different. I could not take prednisone. I get tested same thing.for liver issues. Periodically. No problems.

I was diagnosed by bilateral biopsies with GCA after loss of eyesight in right eye in Nov. 2023. Immediately was started on prednisone 60 mg. After two months started tapering prednisone and started Actemra 162 mg. Took both while I tapered prednisone. Stopped prednisone after 6 months while continuing Actemra. I have been taking Actemra by weekly injection until last month. This month started tapering my injections to every 10 days. During these 2 years only prednisone gave me terrible side effects during and after. I have never had any side effects from Actemra. All labs have been and continue completely normal. My eyesight returned after only a few weeks on prednisone with no problems since. I am treated by a rheumatologist (D.O.) I plan to stay on Actemra as long as my physician directs me. I hope to never take prednisone again. Best wishes.

@mam24

Prednisone probably saved my eyesight more than 30 times. I was very grateful for Prednisone when I only needed to take it on a short term basis.

I was never diagnosed with GCA but I had annual flares of uveitis for approximately 20 years. My routine was 60 to 100 mg of Prednisone but I tapered off again in 4-6 weeks. My ophthalmologist never tried anything else other than Prednisone because it worked so well and I could taper off quickly.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
-----------------------
I didn't mind Prednisone when I only had to take it for a few weeks to treat every flare of uveitis. When I was older at the age of 52, my rheumatologist diagnosed PMR, That was when Prednisone was initiated "long term" for 12 years. I never could taper off Prednisone again until Actemra was tried. I had many side effects from long term Prednisone not to mention one medical complication after another.

Fortunately, Actemra eventually allowed me to permanently discontinue prednsone. I have now been on Actemra for 7 years and completely off Prednisone for about 5 years. I don't have any serious side effects from Actemra but I still have residual side effects from long term Prednisone use. However, I have been able to discontinue about 5 additional medications that were treating the Prednisone side effects.

More importantly, I don't have flares of uveitis or PMR anymore. My rheumatologist doesn't plan to ever stop Actemra. I asked my rheumtologist when Actemra would be stopped. He asked me why I would want to stop Actemra when there wasn't a good reason to stop Actemra.

We agreed to continue Actemra because it was keeping me off Prednisone!

I will probably never recover from the effects of the prednisone in my treatment. It did bring remission of the GCA. The worst is the ongoing, not healing, full rupture of my left Achilles tendon with its accompanying plantar fasciitis. It also contributed to weakness in my legs that requires me to walk with a walker at all times. In addition, prednisone activated severe osteoarthritis pain throughout my body. Some of it has lessened but not all. It also left me with glaucoma in both eyes that is controlled with daily medication. I control the pain with two opioid medications.and continual physical therapy. I am presently undergoing laser treatment for the pain associated with the plantar fasciitis. All of this started before I began Actemra. No more prednisone!

@mam24

Interesting!

I had a "spontaneous" rupture of a tendon connected to my thumb when I was on prednisone. It happened at work so it was a work related injury. My employer said it wasn't work related at all and blamed prednisone. It takes a lot of force to rupture a tendon and all I did was push a button with my thumb. I had hand surgery and my thumb was reattached and works well again.

Cosopt eye drops for high intraocular pressures was another medication I was able to discontinue after Prednisone was stopped. Now I only have a "history of glaucoma."