GCA-Diagnosis

[LRevell]

So far on my journey after diagnosis of GCA was put on 60 mg Prednisone and went down slowly to none. Have been on Actemra shot weekly for 16 months now with no flare. Has anyone gotten of Actemra as well as Prednisone with no problems?

[PMRpro Ambassador]

I'm fairly sure there are people who get off Actemra without a relapse, especially when they are able to stay on it as long as they need. Unfortunately, in the UK use of Actemra for GCA has been limited to a year and several have relapsed then resulting in a study to show those numbers.

I'm also not sure how many US members who have been on Actemra and got off pred and then stopped Actemra have hung around the forum. Many people who have recovered sail off into the sunset and get on with living life.

This clinical trial study

pubmed.ncbi.nlm.nih.gov/309...

found the GCA remained controlled for some months before relapse but that others did not relapse.

This study

jrheum.org/content/early/20...

where patients were on Actemra for much longer found that over half of patients relapsed after discontinuation.

It isn't clear how long treatment is required - but since in the vast majority of patients treated only with pred, GCA does burn out and go into remission in anything from 2 to 5 years, it seems reasonable to assume that Actemra won't change that, just reducing the duration of the pred being required. Actemra doesn't affect the actual underlying disease process - it is just a very expensive, albeit very effective, steroid sparer while the disease process is active.

[LRevell in reply to PMRpro]

Thank you so much for your reply. I know basically I have a disease that has no cure but always one to think positive and hope to find a few people out there off all meds and doing well. Maybe just hoping for a miracle!!! I appreciate the info you shared with me.

[DorsetLady PMRGCAuk volunteer in reply to LRevell]

I had GCA, and only on Pred . Been in remission since 2016. .. and doing very well thank you. 🌸

healthunlocked.com/pmrgcauk...

[LRevell in reply to DorsetLady]

Thank you so much for your reply. I’m so happy to hear that you’re doing so well. It gives me hope! 😍

[PMRpro Ambassador in reply to LRevell]

DL and I both think that you are more likely to get off pred for GCA sooner than someone with PMR - that really is the impression we get. Many, many people have got off pred entirely and had no recurrence of GCA symptoms long before the advent of Actemra. Actemra removes the need for months of high doses of pred - but it probably doesn't shorten the duration of the actual disease process in any way. I think it is a symptom of the modern desire for a pill for every ill and instant results. Pred does have some bad sides to it, but many can be managed or even avoided. Actemra may improve that aspect - but it comes with its own problems and a hefty price tag. Perfection it certainly isn't.

[Grammy80 in reply to LRevell]

I've been on Actemra and prednisone since 8/5/2019. They called my GCA 'raging' at that time after a temporal biopsy....I'd had the classic symptoms but knew nothing of the disease until I lost the sight in my left eye and called an ambulance. (I'm in Indiana, US) It wasn't until June of 2024 I got to zero pred and stayed on the Actemra. Within a month I flared and received 1000 mg pred, IV but flared again in two days. That time I went for IV Pred, 1250mg, three days in a row to save my right eye. Boy, that aged me...since then I was on 60mg for most of July, August and September. I am now taking 15mg per day, plus Actemra and will go to 10mg soon using DL's method.

I have a friend in Maine, GCA, 88, and she take Actemra every other week. Over the past 5 years or so, she tried tapering but noticed discomfort right away....quality of life beats all.

I've been told I will always have to take 5mg of Pred. I just hope that I can get to five because it is now taking a toll on my overall health.....finally. BUT......I will continue my Actemra also

If I were you..if Actemra does not cause any side effects for you.....I would continue with that little insurance policy. To me, there is no cause for celebration, for patient or rheumatologist, to get to zero pred.....if you flare. Live fully has been my motto...as long and as much as you can. It is a personal decsion of yours which I respect.....but that is just my two cents.

My best to you and Happy New Year to all.💞

[GCAinCanada]

Hi LRevell:

I have GCA/LVV but in remission for 2 years. Was on Prednisone for 3 years and then Actemra for 2. (as I decreased the Prednisone rather rapidly). I am Actemra and Prednisone free right now but monitored with blood tests and yearly CT scans. The Actemra was excellent for getting off the "devil's tic tacs". Cheers from Canada

[LRevell in reply to GCAinCanada]

What a blessing that you’re off all the drugs. They all have crazy side effects! I kind of think living a healthy life with as little stress as possible is the key. My blood results have been perfect the last two times and hope it continues.

Thank you for your reply! 🙏🏼

[PMRpro Ambassador in reply to LRevell]

If you mean your inflammatory markers, sed rate and CRP, they will be perfect because of the way that Actemra works. It cannot attach to the receptors it needs to be able to create inflammation so they don't rise. It doesn't mean the GCA has gone away, other means must be used to monitor that.

[LRevell in reply to PMRpro]

Thank you for that! Next time I see my Rheum will speak to him about that.

[Gangley]

Yes, I have. Been off prednisone since September 16/23 and off Actemra since Jan 31/24 and all is well so far. Hope the same for you. Having blood test every 2 months and all is well there as well.

[LRevell in reply to Gangley]

Thank you for your reply. So happy for you and the fact you’re off all medicine. It’s a long hard journey with this disease and hearing this news is so good to hear.

[GCAfiveyearrelapse]

Hi -- I am down to 1 Actemra injection every three weeks after one year of biweekly and one year of weekly. Plan is to drop Actemra entirely in a few months. As I understand it there is very little knowledge about Actemra tapers and GCA, oher than in general, Actemra works for many patients as a steroid-sparing agent. In fact, my Rheum asked me what I wanted to do -- stay on an every 3 week dosage or try to go off completely. I chose the latter. We'll see. So far so good. Best of luck to you!

[DorsetLady PMRGCAuk volunteer in reply to GCAfiveyearrelapse]

If you raised this reply as a new post you might get more replies from those using Actemra,

Only a few will read this especially as it’s 7 months old -probably only the author who gets notified automatically, plus PMRpro and myself (who both read every post & reply).

I’ve never been on Actemra-wasn’t approved in UK when I had my GCA .

[PMRpro Ambassador in reply to GCAfiveyearrelapse]

You are in the USA where it is (almost) freely available. In the UK, where the majority of members are located, and in Australia it is limited to use for a year without considerable effort. LemonZest11 also tapered as you have done but when she got to every 4 weeks (I think) she flared - though the scans show large vessel vasculitis rather than just GCA - and she had to restart pred. Grammy80 also was on Actemra but when she got to/below 5mg (can't remember of the top of my head) she too flared but with GCA problems and had to return to high doses of pred to save her sight. She is in the USA, not an Actemra sourcing problem but an apparently too enthusiastic rheumy.

[GCAfiveyearrelapse in reply to PMRpro]

Thanks very much for this. These examples suggest I need to tread carefully, especially if my access to TCZ is less restricted.

[LemonZest11 in reply to GCAfiveyearrelapse]

As PMR Pro says, I have GCA/LVV and with Actemra, managed a full but very slow taper of pred. Was off pred for just over 1 year and on 3 weekly Actemra injections when Rheumatologist decided to taper to 4 weekly. After several of those I began feeling calf pain when exercising. MRI showed LVV was back big time!! Or had never really gone away. Back on 20mgs pred and weekly Actemra, all returned to normal BUT, my neutrophils went mental and I had to come off Actemra. Now slowly tapering pred until I see Rheumatologist in 3 weeks. She's going to offer me a trial of another biologic I think. My advice? If you have access to Actemra with no side-effects, stay on 3 weekly. It doesn't work at 4 weeks. Or just stop and 🤞.