Pausing Actemra

[Pamk1949]

Hello there! I have PMR/GCA and have been taking Actemra for the last two years and am currently on 1.5 mg prednisone. I recently posted about a “supraventricular tachycardia” -I had a rapid heartbeat for 4 hours. While in the emergency room they did a LOT of CT & imaging tests. Their findings were: 1) diverticulosis 2) low neutrophils, and 3) SVT. My rheumatologist suggested a break with Actemra, since tests revealed the above 3 items that are questionable for continuing Actemra. My question is —should I increase my prednisone from 1.5? I don’t seem to have symptoms, just a little fatigued. It’s a little scary losing one of the protections for GCA.😳Thanks for your opinions/replies!

[SheffieldJane]

I wouldn’t , although I would be alert for a return of symptoms, the fatigue I would expect for a long time, after GCA. Do you have an endocrinologist or has your Rheumatologist arranged for a Synacthen test. To ensure that your cortisol levels are fine? I would be cautiously optimistic, you maybe emerging from the woods. I hope so! 🍀

[Pamk1949 in reply to SheffieldJane]

Thanks SheffieldJane, yes I am cautiously optimistic —I have more pred if needed too. The endocrinologist idea is a good one 👍

[DorsetLady PMRGCAuk volunteer]

Would say the fatigue is probably down to adrenals, so as suggested by SheffieldJane get them tested... and meanwhile monitor for

a. any returning GCA symptoms, and b. any other adrenal insufficiency issues.

[Pamk1949]

Thank you DorsetLady- -I’m making an appointment with an endocrinologist today—also since Actemra has been discontinued maybe my bloodwork will show inflammation better—I can test it more often. And as this forum has taught me , symptoms rule, so I’ll be on the lookout!

[PMRpro Ambassador]

Personally I wouldn't stop the Actemra - I have atrial fibrillation, due to PMR, worse with inflammation in a flare and the cardiologist has never suggested stopping the Actemra I have been on for the last 3 years or that I shouldn't start it, the a/f (which is one form of SVT) has been there for 20 years, it is common at our ages and more common in certain rheumatological conditions, especially PMR.

More care is required if you have diverticulosis - most of us probably do, another matter if you were to develop diverticulitis but there are plenty with both on their list.

Your rheumatologist should be doing blood tests for the neutrophils - too low would mean you pause the Actemra to allow them to recover but some lowering is acceptable. And they know a lot more about it than either a cardiologist (or an ER consultant) or an endocrinologist.

If your GCA is still active, it is quite likely that you will need more pred at some point - about half of Actemra patients relapse in the year after stopping Actemra.

[Pamk1949]

Thanks PMRpro. I’m not stopping , but pausing Actemra. The rheumatologist suggested a break, and I thought it might be a good idea. This is my second time with GCA. The first time was in 2017 and I tapered prednisone slowly for 4 years. I was completely off prednisone for 1 year. But in 2022 GCA came back again, that’s when I started Actemra. I’ve been on it now for over 2 years (and I also take 1.5 mg pred daily). I know is only a 50/50 chance Actemra will help.

If I keep taking the Actemra, how would I ever know if my GCA is in remission? How do I monitor the diverticulosis while taking Actemra? Is there a special diet? I’ve had a home monitor for the SVT for the past month, the cardiologist will get a report soon. I’m sorry for the many questions——and venting!!!

Thanks again, I really do appreciate any advice I can get.

[PMR2011 in reply to Pamk1949]

One way to come off the Actemra is to increase the interval between injections. Taper to every other week, then every third. Once monthly and no symptoms I stopped it. and monitored for GCA symptoms. My disease has followed a similar path as yours. Was completely meds free for 7 months. Then GCA flare with PET scan showing it in my Aorta. Back on both Pred and Actemra now.

[PMRpro Ambassador in reply to Pamk1949]

A few have just increased the intervals for the injections until there was any evidence GCA was still present. LemonZest11 was then found to have LVV but had had no symptoms so it is a bit variable as to how you get on. To have got to 1,5mg/day shows the Actemra has worked reasonably well for you. But whoever you are - it isn't a cure.

There are diets to minimise the likelihood of diverticulosis becoming diverticulitis but don't know off-hand. You could post and ask, I'm sure there are a few others.