I’m in need of advice now from anyone who has experienced taking Actemra with GCA. I was diagnosed clinically on symptoms 5 years ago. temporal biopsy was negative—I took prednisone for four years tapering very slowly. I’ve been off prednisone for a year now, but started again with symptoms. Just had another temporal artery biopsy and it is now positive for GCA. Spent last 3 days in hospital with IV treatment methyl prednisone. Starting today I’ll take 50 mg prednisone daily. There’s talk of putting me on Actemra, but I’m very concerned with side effects. Prednisone seemed to work well and I thought I was done. Doctors always doubted I had GCA from 5 years ago (because the biopsy was negative) but I still tapered slowly using Dorset Lady’s taper.
I was very lucky with a quick acting neuro opthmologist and advice from all of you to get to the emergency room. Any information and experiences from you would be very helpful. I’m in the USA.
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Pamk1949
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I have been on Actemra for 2+ months (for PMR as it happens) and have just done the 10th injection. The first few I felt "funny" about 24 hours later but that seems to have gone. I was a bit tired for a couple of days - this last week that had gone. The injections are fine - allow a good amount of time for them to warm up after removing from the fridge and they don't hurt at all. I developed symptoms of a UTI after a few weeks - missed one shot because of antibiotics but have had no problems in that respect since. Other than that I can't identify any adverse effects.
One strange effect is related to the atrial fibrillation I have which was almost certainly caused by the autoimmune bit of PMR. It is always worse when I am flaring and it has been a pest for the last few months. Part of the high dose of pred I have needed was to control that. The tachycardia episodes (fast heart rate) are notably fewer since the Actemra started to take effect and I have even had a couple of episodes with bradycardias (slow heart rate!). I'm assuming that is because the inflammation is so reduced the a/f is also improved. I may have to adjust the cardiac medication although it isn't a great concern, I have a pacemaker.
I am just beginning to identify improvements in symptoms of various sorts and I feel different. My rheumy said at least 2 months for that - he was right.
I self inject Acetmra since one and a half years now. I was diagnosed GCA (large vessels, non-cranial) and was able to taper prednisolone from 40 mg to zero within 5 months. I have until now no side effects from Actemra (and also all blood values are in a normal range - I had slightly increased liver enzymes since my teenage years and they are now in the normal range). So for me Actemra works very well and I have the same quality of living as before the disease.
Hi. I had Actemra for large vessel vasculitis for one year, as limited duration in UK, and completed in February this year. No problems with it. Felt good on it. Problems have resurfaced now I have stopped so trying to get things sorted now. But it was effective for me while on it. Good luck
Actemra has been good for me too. Helpful reducing the prednisolone and much better than methotrexate which made my hair fall out! I’m only allowed another four months worth (in addition to the Covid extension) so now worry that I won’t cope without it.
I am in my 3rd year on Actemra for GCA. It has worked well for me. Was able to come off Pred completely (tho took a full year to get there). Feel great, no side effects other than borderline high cholesterol. I did stop it for 4 months and symptoms came back so went right back on it with only a 2 week course of Pred to cover me. Am currently at every other week injections. Yes, the literature on side effects is very long, however it would be for Pred too if that drug was just being introduced today!
The good news is, if you have any problems you can just stop it, you don’t need to taper.
I have been on weekly injections of Actemra for approaching one year, except for a couple months when there were supply chain issues. I have had no side effects from the medication and was able to taper off prednisone over about 6 months. Fortunately I have been able to receive it at no cost through the Genentech Foundation, as it is very expensive and even with insurance, the co-pays would be very high. Good luck!
Agree that if you are in the U.S., you need to check your insurance. Genentech would not supply the injectable at no charge for me (no reply to my appeal)and my co-pay was to be $1999 per month , with the drug insurance part of Medicare picking up about $4000/ month, Extremely expensive stuff here - I stuck with my $6/month prednisone.
I have been on monthly Actemra infusions given at a local hospital infusion center for a year now. I take the infusion instead of the injections because Medicare Part B and my supplement plan pay for it completely this way. If you take the injections it is billed under Medicare Part D and the copays are huge! I am now completely off prednisone (began at 60mg) and feel like myself again. So far, I have no side effects that I am aware of. I will take it over pred any day!!!
Quite the system we have here. Go to the hospital for infusion and it's covered, do the injections at home and it's $2000/mt, at least. Makes no sense.
I suspect you are correct- I have Medicare plus Blue Cross/Blue Shield which would likely have paid most or all for an infusion. Unfortunately my rheumatologist said her clinic had not been able to get Actemra for infusion for several months because of hospital demands and Covid. She said she would contact some major clinics within 30-40 miles, but apparently was unsuccessful.The injectible goes thru the pharmacy part and coverage is different. At 4mg. pred, going to 3 tomorrow, I've moved on, but it sure would have been nice to avoid the multiple side effects of prednisone, Thanks for your response!
I also had good experience w actemra injections. Started w 60m of prednisone, tapered off in 5 months w actemra. Injected weekly for about 1 year, then tapered off over 9 months, going down to every 2 weeks, then every 3 weeks, finally every 4 weeks. No side effects. Total time on actemra was 1 yr 9 months. Been off all meds for 5 months and feeling fine.
My rheumy is strong believer that side effects of prednisone are more serious then those from acetemra.
I have been on Actemra for over four years now and I have not had any side effects. I give myself the shot once every two weeks. Actemra has been very good for me and it is like it gave me my regular life back. I hope this helps.
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