What's your experience with Actemra for GCA?

I just started on Actemra for PMR. I have received two once a month infusions so far. How long did it take for anyone to feel relief?

This is a long story. My PCP diagnosed me with Templer Arteritus and prescribed 60 Mg Prednisone daily, referred me to a non doctor Rheumatologist, who referred me to a surgeon to do a biopsy to determine the possibility of GCA. By the time I was able to get an appt. with the surgeon, over ten days had elapsed while being treated with Prednisone and a biopsy would have not been accurate. So one was not done. My Templer was treated with Prednisone and the swelling disappeared in two days. My Rheumatologist kept me on this med and Paqualine (sp?) tapering the Prednisone down to 2mg daily over 6 months. I felt fine. I was told to stop both meds at the same time to see what would happen. What happened, was I experienced severe withdrawal, dry heaves, stomach cramps etc. She placed me back on these drugs for another 6months and I took control of the tapering and slightly quicker, but right down to the point of .025 every other day for the last two weeks. And then the Plaqualine in a shorter but similar manner over a month. Had no withdrawal problems or flareups of the swelling. At this point, I asked if I should remain on a maintenance program to avoid re-occurrance and was told to just watch it and we would repeat meds as required. Of course, this swelling could kill me if it appeared in an unnoticable place in my body. Over the next few months, I got weaker and weaker to the point where I could not walk 75 feet to the mailbox and back without resting on the way. My blood tests showed infection indicators but no one knew why. After being examined by 7 doctors from various disciplines, I was finally put in contact with a Rheumatologist who is a DOCTOR. After a battery of blood tests, scans, and MRI's she concluded I had Giant Cell. She placed me back on Prednisone for 6 months and then discontinued the Prednisone and started the Actemra 162 mg weekly by self injection. I have been on it now for about a year and a half and have the GCA controlled without the side effects of Prednisone. However, after about a year, it appears that I might have developed a reaction to the Actemra and experience hives on occasion. I just take one Zyrtec tablet which eliminates that. I also take Amlodipine and Rosuvastatin and a baby aspirin daily. Of course, there are no guidelines on how long to keep a patient on the Actemra and if the med will control or cure the disease in a given time. My MRIs are showing great improvement and, depending on the next one, I will probably have my Actemra injections reduced to bi weekly.

@moldy I read your other comments on actemera and you seem to be doing quite well on it. Taking the Zyrtec for the swelling isn’t too much of a problem, is it. Most of these drugs can help patients manage their disease, but they don’t cure them. Currently, most autoimmune disorders have no cures, just long remissions. My AD affects my brain and I can expect to be on mycophenolate forever. Fun!
Do you trust your doctors to help you with your disease?

I trust my doctors, but I do not blindly follow their advice. No one knows my body as well as me. When I am prescribed a new medication, I take half the designated dosage the first time just to lessen any negative reactions that I might encounter. However, I took the full dose of 60 mg of Prednisone without hesitation, the first time, because the alternative was permanent blindness. Ya gotta be sensible also.

I had a raging case of GCA, which was misdiagnosed for about nine months, at which point I painlessly lost sight in my left eye one night in August 2019 while I slept. It was about 3 am when I got up to go to the bathroom that I noticed it. I knew I hadn't had a stroke and called an ambulance; no sirens, please. From the hospital, I was sent to an ophthalmologist who put me on 125 mg of prednisone per day. About a week later, I had a temporal artery biopsy by a vascular surgeon which clinched the diagnosis....then...I was sent to a rheumatologist who started me on 80 mg of methylprednisolone and Actemra. Yes I went through sleepless nights and months I don't remember. Just this year I got into single digits and am now at 3 mg, along with my Actemra injections. I'm a big proponent of Actemra and it helped me a great deal. The only caution is that if you get any kind of infection, your doctor should have you cease the Actemra for a period until the infection clears. I had a bad bout with cellulitis in 2021 and was hospitalized. We discontinued Actemra at that time and ultimately, we teamed up again. Recently I asked my rheumy if he intended to continue the Actemra after I got off pred, and he answered, certainly. Like many of us it has been a roller coaster but hate to think where I would be without that injection. One of my friends who could not take pred and had both PMR/GCA is still taking one injection per month, and it seems to serve her well. I try to remember one size does not fit all. I wish you good fortune.💞

Hi! I'll be 80 in a couple weeks. Diagnosed with GCA – which began May 26, 2022 with a MASSIVE headache early morning. I "succumbed" to the (strongly) recommended 40 mg prednisone course finally on June 6 – after resisting because I'd associated my not-infrequent, mild, temporal headaches with a lectin intolerance I've had for 25 years – and because I've had a "sensitive-to-combing-hair" scalp – which is a prevalent GCA symptoms – since before 2010 (– without having a medical practitioner ever having an explanation for it). Because I have "severe" osteoporosis (– T-scores are -4 –), I was "terrified" of breaking hips, etc. if I had to be on high dose pred. for any length of time.
So my rheumatologist's "Attending Physician" offered Actemra (– I'm being seen at UNC Medical Center's (Chapel Hill) department by a resident-in-training). I began monthly infusions at UNC's Therapeutic Infusion Center on September 1, 2022. After the fifth infusion, my labs required skipping an infusion – the AST too high, absolute neutrophil and platelet counts too low. Labs rebounded perfectly in two months. It was decided then to space infusions out to 6-week intervals.
Because I was SO apprehensive about the reputed gastritis and other intestinal perforations reported in tocilizumab (Actemra) clinical trials, since the beginning I have been on a 4 mg/kg dose – instead of the 6 mg/kg that's recommended by Genentech for GCA (but isn't offered at UNC), or the 8 which UNC normally uses for both GCA and PMR patients.
I got to this discussion group by googling "genentech tocilizumab side effect of trigger finger", in an effort to find out whether the "radial sagittal band ruptures with dislocation" and a "lateral band snapping syndrome" I began experiencing 4 months into the Actemra treatment, might be a side effect of the drug. There is mention at Genentech's site of such incidents.
Other side effects are: a good bit of increased gastritis – requiring 'drastic' diet restrictions; mild early morning headaches; fatigue – I needed 9 hours sleep while on monthly infusions but am OK with 8 since shifting to 6-week intervals.
I've now had 8 doses and will have doses #9 and 10 on July 24 and September 5, respectively, before I see my rheumatologist on Oct 9. She mentioned tapering me to 8 week intervals at that point.
I've kept away from unnecessary interaction with masses of people. At my PCP's suggestion, I got a 2nd, Covid bivalent booster midway between the June 12 and the upcoming July 24 infusions (– rheumatologist told me to get vacinations as nearly exactly midpoint between infusions as I could – to minimize reduction of effect/potency of one on the other).
I still wear a mask and a face visor in shopping trips.
I live at a Continuing Care Retirement Community (CCRC) in half a duplex by myself, been a vegetarian for 50+ years, and am generally in good health – or good enough to resume pickleball after the course of tocilizumab's over so I don't have to be ultra careful about potential injury/infection. ;')

@dbyrne, I'm also tagging you in this discussion as well to read many members' experiences on Actemra. @gretchie, @lmoross, @pickle7 all have tried Actemra and may wish to share their experiences with you.

Thank you, very helpful.

I was never diagnosed with GCA but Actemra was offered to me almost 5 years ago for PMR. I took prednisone daily for 12 years for chronic PMR symptoms.

I started with Actemra injections every 2 weeks while I was still taking 10 mg of prednisone daily. My rheumatologist didn't want me to take prednisone for the rest of my life. I didn't want to take prednisone anymore either except it was impossible for me to taper off prednisone.

After Actemra was started, I was off prednisone in less than a year.

My symptoms returned gradually whenever Actemra was stopped. It wasn't like the sudden "pain crisis" I would experience whenever my prednisone dose was too low.

For various reasons, my injection interval was changed from every 2 weeks to every week. I currently do a monthly infusion which was my choice. I like not doing injections anymore and my symptoms are well controlled on a monthly infusion.

I have been completely off prednisone for almost 3 years. I have not experienced any serious side effects from Actemra. However, there are potential side effects from all medications and Actemra is no exception.

I have discontinued 5 additional medications that were treating prednisone side effects. One by one, all my other medications have been stopped. I'm not sure when Actemra will be stopped. Except for Actemra, I'm almost medication free.

Actemra might not work for everyone. I tell people they won't know if it works or not unless they try it.

Actemra doesn't work immediately like prednisone does. My rheumatologist said to give it at least 3 months maybe longer to see if it works or not. You probably won't be able to be off prednisone in 3 months. However, Actemra can be easily stopped if it doesn't work or you develop any side effects from Actemra.

Thank you, this was very helpful.