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.

[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.