I’ve had GCA now for 14 months. Started out with failing vision in my left eye and lost most of my vision. Right eye still 20/20 thank god!
Started with 60 mg Prednisone and slowly decreased after 2 months added Actemra injections once a week. Now done with Prednisone and on Actemra only. I’m doing well thus far and wondering if anyone is doing well on Actemra only.
Thank you, looking forward to hearing back from you.
About half of patients will be well on Actemra only after 6-12 months. However, most of the contributors here are from the UK where Actemra is still subject to a 12 month limitation - and a recent study has established that quite a high proportion of patients relapse after Actemra is removed. Some have not achieved zero pred in a year and require a higher dose when they flare. Others have got off pred - and symptoms return without Actemra.
There are also patients in the USA who have not got to zero pred even after some years. They are a mix of the 50% who need a low dose of pred for the other mechanisms that can cause the inflammation in GCA and some who have got to very low doses.
Hi, I am in the US and coming up to being on Actemera two years this October. At one point I did get to one Mg of prednisone. My GCA flared and I had to go back up. I tapered very slowly down but too. Quickly and flared again. I told the doctor that I would only go down 1/2 mg a month. He wants me to get to 5 snd stay there. I don’t know if anyone who is only on Actrmera. It only works for part of the GCA.
What were you symptoms of a flare?
Thank you for responding to my message.
I had head pain, temple area. I also had my eyes affected, blurry but that could have been due to my dry eyes. They got better with drops. I have experienced also ear pain, on the same side as my temple. All these were flair indicators for me.
Thank you so much for your reply. This disease is horrible and since I’ve lost the majority of my eye site in my left eye I’m just a little anxious about it all.
I have been on Actemra for 2 years 3 months. Actemra only for 1 year 7 months. I have been doing wonderful on just Actemra. I’m one of those people who felt better pretty quickly after starting it.
Not sure when and if I can get off of it. I’m on half the original dosage for the past year and still feel great. I tried to go every 8 weeks for my monthly infusions but started to get slight headaches, so I went back to monthly half dosage infusion.
I see my rheumatologist next month and see if I should try extending the time between infusions again.
Hi, I am encouraged by your post. I too responded very well when I first started my infusions. Everything was going good with me until it didn’t. I am hopeful this time around it will be better. Thank you
So sorry to hear this and about your eyesight. I’m the same way but my rheumatologist says there are no studies for how long an Actemra only action takes to cure GCA. I’m doing the infection s rather than infusions but in my case I experienced flares one time for every time I tapered (1 week to 2 weeks, 2 weeks to 3 weeks). Rheumatologist now says I can go to once a month but I’m hoping there isn’t a flare this time. The good news is that you only go back to where you were for injections if you have a flare and possibly a small dose of prednisone. Although every one and every boss are different, I’m approaching 3 years of Actemra only so try to prepare yourself for a possible long treatment term.
but my rheumatologist says there are no studies for how long an Actemra only action takes to cure GCA.
There is no ‘cure’ as such for GCA - it a self limiting disease and goes into remission as and when it feel like it…
Thank you for your reply. I’m trying to figure out what a flare is so I’ll know when it happens. I’ve been doing well on just Actemra thus far.
This link contains explanation of a flare compared to steroid withdrawal symptoms. It may not be exactly the same for everyone. And don’t be paranoid about it, just watchful.
For info, I never had a flare… whether that because I was very lucky, started on a v. high of Pred for a good while or was never pushed to reduce too quickly - or a combination all three I don’t know.
Actemra is a very sophisticated steroid sparer - not a cure, There is no cure.
Yes, I’m aware there is no cure for GCA but just like to be aware of things to be watchful of. When you’re first diagnosed with it you want to get as much information as you can. You can get it from your Dr. but somehow I still want to hear from people who have it.
Hi yes i am now only on Actemra. No problems at all.Glad you off the stetoids 😊 x
Thank you for your response. Happy to hear you’re doing well on Actemra only as I am. I was started on 60 mg Prednisone and tapered off. Gained 30 lbs. 😩
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