Questions for people taking Actemra and Kevzara injections

Yes, it is possible to bypass the biopsy for GCA with a temporal ultrasound in many cases, including mine. But the training and equipment for the temporal ultrasound is specialized, and very different from the normal ultrasound. My Rheum doc sent me to Univ of Wash “fast track GCA clinic” for the ultrasound. This clinic takes the patient within a day of two of scheduling due to the possibility of vision loss with GCA. Unfortunately, I understand that although the number of these clinics is expanding, they are still too far away for many people, who will have to have the biopsy to confirm.

Here are my latest questions for those on the Actemra infusions.
Are you able to sleep well?
Is there a lot of fatigue or are you still able to exercise as normal? I do a gentle yoga routine and do a moderate 45 minute walk several times a week.
How is your quality of life affected?
Are there emotional or mental issues?
I will drop to 50 mg. of Prednisone this week which I understand I will be taking concomitantly with the infusions whenever those are started.
I recognize our bodies are different so we probably all have different experiences.
I am just wondering what to expect from your experiences along with what they will tell me at the clinic.
Thank you for any responses you might share.

You’re doing good. It took me 6 months to get to 2 mg from 3. I realized that I can’t hurry this process that whatever my system needs to take over what prednisone is doing will just take time. I’m now at 1.5 every other day and 2 on alternate days. Actemra has been very helpful to keep the headache away in the process of reducing the prednisone. 👍🏻

I had problems with sleep quality, fatigue. exercise intolerance and I rated my quality of life as poor when Actemra was started. Those things didn't improve until I was off Prednisone. All those things gradually improved the longer I was able to stay off prednisone.

The most amazing thing to me was how many prescription medications I was apparently taking for Prednisone side effects. In addition to tapering off Prednisone ... I was able to discontinue at least 5 additional medications. My doctor says she likes to deprescribe medications better than prescribing medications. I have also stopped several over-the-counter medications.

I just had my first infusion a little over a week ago and have had zero issues, other than perhaps a few more naps needed. I'm able to continue a light exercise routine and am very active during the day. I've been told I'll need to wait months to see positive benefits, but I'm convinced I'm already moving with less pain. Could be the placebo effect, but I'll take whatever I can get!

That’s a very good question.

My first round with Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) lasted from 2018 to 2021. Unfortunately, I experienced a relapse in 2024. After three failed attempts to taper prednisone at 7 mg, my rheumatologist recommended starting Actemra alongside a rapid taper from 15 mg of prednisone.

While my GCA/PMR symptoms remained unchanged and my quality of life was good during this period, the quick taper failed again at 7.5 mg. At that point, my rheumatologist suggested discontinuing Actemra. However, I believed the issue was with the tapering speed—not the medication itself—and asked to continue Actemra. Thankfully, he agreed.

I returned to 15 mg of prednisone and did a quick taper down to 10 mg. From there, I began a more gradual tapering plan: reducing by 1 mg per month with the goal of reaching 5 mg. I’ve now been at 9 mg for two weeks, and my quality of life is excellent.

It’s worth noting that I receive an Actemra infusion every four weeks. On one occasion, I had to wait five weeks between infusions, and many of my GCA/PMR symptoms returned during that final week (I was at 10 mg at the time). I also tend to experience minor symptoms during the last 2–3 days of each four-week cycle.

I wish you well in your battle with PMR, and I hope this post has answered some of your questions

I have been on Actemra infusions for 2.5 months. I have been on prednisone for PMR for 4 years. My doctor assumes I also have GCA which is why I'm now on Actemra but I have never been on the high prednisone dose you are on, so my case is different. I've started tapering down from 7 mg prednisone. I was on Kevzara for 8 months. My experience with both is similar so far. After my second Actemra infusion I definitely felt better, could do more, slept pretty well. I don't notice any mood changes. As far as how I feel, no problem. I'm just as concerned with what the drugs are doing to my body and on both of them I've had lab changes. Most significant is a rise in cholesterol and a white cell drop to below normal. My Rheumatologist thinks I should go on a statin for the cholesterol and the white cells indicate to me that my immune system is suppressed too much. On prednisone alone all my labs were normal except for LDL which was 134, 4 points above normal. Now I have 5 tests out of range and a doctor wanting me to add another drug. If Actemra allows me to sustain a prednisone taper I'll stick with it. Otherwise I think it has too many side effects and I'll stay with prednisone, which has not caused problems with its known possible side effects like blood pressure, blood sugar, weight, etc.

Thank you for sharing your experiences.
It sounds like you have a good working relationship with your doctor. That's so important.
Like you, I wonder what the Prednisone, the Methotrexate and now possibly starting on Actemra are all doing to my organs. One hand helps and the other destroys. Yikes!
We try to eat well, get enough sleep, and exercise to balance out the "destruction..."
I am glad we have doctors who will listen and advise.
I really do not want start a statin if my numbers rise and my white blood cell has dropped some. I am off the MTX (Methotrexate) but it did help when I was on Prednisone for PMR. It took three months to kick in but I also had to have liver checks while on it.
I appreciate your experiences and wish us ALL the best as we regain health and quality of life.

Thank you for relating your experiences with these diseases.
It sounds like I will be on both Prednisone and Actemra at the same time. I guess that is the way it works.
I agree with you- perhaps you were tapering too fast. I am glad your doctor listened to you, after all, it is our body that speaks the loudest!!
My doctor did not understand that I had to taper 1/2 mg for two months( not the usual one month taper according to her) after I was working down to 2mg Preddie and 2.5 of Methotrexate (MTX) as I saw the "supposed" light at the end of the PMR tunnel after 18 months.
Then GCA struck so I am at the start of a new medical journey. Alas!
Thank you for sharing your experiences.
Peace!

Wonderful!
Always good to hear such a positive report...