Just curious on who has been on pred and Actemora for long periods of time and if you successfully got off it

[luv2read]

Who on this forum has been on prednisone and Actemra for long periods of time and successfully got off it/them? I remember PREMPRO said 12 years and I am assuming still on it. Can GCA go into remission? I am currently on 4mg of pred and weekly injections of Actemra. I have benn to my GP, my eye doctor and my vascular surgeon who have questioned my continuing use of prednisone, yet my rhuemy insists i will be on some form of pred until my dying day! Any thoughts?

[DorsetLady PMRGCAuk volunteer]

GCA does go into remission for most.I was on Pred for 4.5years - Actemra not authorised in UK at the time….there are others- jinasc and SnazzyD for example who are both in remission.

Your Rheumy may be correct in that you may be on medication for life, but honestly I don’t think he, or anyone can say that for certain.

I see you asked a similar question a year ago, when you had been on Pred for 2 years…so to be at 4mg at the 3 year mark now is quite acceptable in my mind…..perhaps your other doctors should stop pressurising you to be off the meds and let your illness run its course.

[jinasc]

Yes, my thought is listen to your rheumy. DL told you I am in remission - last pred 31st December 20111. . However when first diagnosed both GP and Rheumy told me could be on pred for life. As long as my sight was safe I would have taken pred forever.

Don't worry about that some kids are on it from an early age and for life. Without it would not be here.

No Actemra then either.

[Chrisellie]

Hi Yes I started on pred and some months later had weekly Tocilizumab /Actemra injections for 12 months and have been off both for over one and a half years.

My treatment and reduction is in my profile.

Not everyone is as lucky as I.

Best wishes for the future.

[baxternoni]

I was on prednisone for fourteen months and it did a lot of damage to my body. Praying I won’t have to be on it long term again. My rheumatologist told us that I would be on Actemra indefinitely due to GCA/LVV. I am now down to two shots per month. When I was on four shots per month my WBC got low. It bounced back when I reduced to two shots.

[PMRpro Ambassador]

Actemra isn't used for PMR anywhere except the USA. I've been on pred for over 12 years - no sign of getting off it!

The vast majority of patients DO get off pred - but 4 to 5 years is typical of most of the GCA patients I have known.

[luv2read]

32 years on prednisone??? Way to get a girls spirits up! LOL!!

I found an article that was titled "Nearly half of GCA patients on Actemra for a Year Stay in Remission After Stopping It." It was a study presented at the 2019 American College of Rhuem/Asso of Rhuematology Professionals Annual Meeting in Atlanta. It went on to say that those who did experience flares were restarted on Actemra and/or given steroids. No dosage amount was given on how much pred or how often Actemra was used.

I can't even fathom what being on prednisone for 32 years has done to your body. I could give you a list of what it has done to mine after 3 years, but I don't feel like writing a book. Actemra has never given me any bad side effects, really. It makes me extremely tired the following day, but nothing that I can't get through.

My next appointment with my rhuemy is in December. I'm going to bring this study up with him and see what he says. My past experience has always been, "You will be on pred for the rest of your life". I'm always hoping for another answer, which is probably detrimental to my GOAL of getting off of it. I just hate what it has done/is doing to me. Positive side though, is that I am now down to 4 mgs a day with weekly Actemra injections. Small steps!!!!