How long to take Actemra?

[potterylady]

I've had PMR & GCA for a year. I've been on Actemra for almost a year. I was tapering steroids pretty well, but had a flare that lasted 2-3 months so I'm back up to 35- 32.5mg of Pred per day. I'm wondering if the Actemra shots are even working for me. I know there are risks with taking it and feel that the less medications the better.

How long does one usually take Actemra?

Should I taper off and stop taking it to see if it's helping me or not?

I know not everyone takes it and I'm on such a high dose of steroids that it seems it's not helping me.

I'd love to hear your experiences and advice. Thank you so much!

[PMRpro Ambassador]

At what pred dose did you flare? Actemra doesn't get everyone off pred entirely - half of patients continue to need something like 8-10mg despite Actemra. This is because GCA can have at least 3 different underlying causes for the inflammation and Actemra only works for one of them. However, what you describe suggests whatever is going on is not caused by the IL-6 cytokine which is the one Actemra works on and I agree with your rheumy, there is something else going on.

Most patients on Actemra outside the UK take Actemra as long as it takes to get the pred dose to zero or IRO 10mg if they are in that half. In the UK it is only funded for a year whatever result they obtain. Otherwise, most rheumies them taper off the Actemra slowly. Some patients remain in it for years if they can't reduce the Actemra without a flare.

You have to discuss it with your rheumy - and she is obviously keen to get you off and investigate further.

[emmamom in reply to PMRpro]

what does IRO mean?

[PMRpro Ambassador in reply to emmamom]

In the Region Of

[potterylady]

So happy to hear it worked for you! I'm not sure if it is working for me or not. I was down to 12.5mg before my flare.

[potterylady]

I was down to 12.5mg before I flared. My rheumatologist isn't pushing me to get off of Actemra, I'm just worried about the risk of taking it long term when I'm still not able to come down significantly on my Prednisone. If people in the UK come off of it after one year, I wonder if I should stop it too.

We are investigating further with my brain MRI and MRA. I have a neurologist that is going to study it next week. But after meeting with him yesterday, he seems to think I'm ok. He will be checking for Multiple Sclerosis. He did diagnose me with neuropathy though.

[Preacherball]

I'm just beginning my third year on Actemra. I am now completely off prednisone. However, I have had some bumps along the way with several infections and/or flares which forced me to increase pred. and also wonder whether or not Actemra was working. But, I decided to stick with the program and hope to be finished with Actemra by this time next year.

[potterylady in reply to Preacherball]

Great to hear you're off prednisone. Do you have PMR or GCA or both?

[Preacherball in reply to potterylady]

GCA. You can take a look at my profile, which is pretty much up to date, to see the ups, downs, and uncertainties of my journey.

[potterylady in reply to Preacherball]

Wow. You've been through it. I also have a weird cough that's new since my diagnosis. Yikes. It's so hard. Best to you and thank you for your support.

[Preacherball in reply to potterylady]

And to you as well!

[emmamom]

I have been on Actemra for two years at one injection a week. I am down to 8 mg prednisone a day. I got down to 6.5 a day but had a very stressful life event occur and had to go back up to 14 for a while and am now down to 8. The way I think about it is that I don't KNOW that the Actemra is working but it probably is. I KNOW that the prednisone is worse for my body than the Actemra, so as long as I can continue to taper down on the prednisone, I will stay on the Actemra. It's the lesser of two evils. If I were in your shoes, I would stay on the Actemra until I was able to get to a much lower dose of prednisone again (maybe 10 mg a day or less?) and then MAYBE try going to Actemra every 10 days for a few months. If symptoms are under control, then every two weeks for a few months, etc. That is my plan, but I hope to get to 5 mg of prednisone a day before trying reduced frequency of Actemra. It's so hard because we hate having any of these things in our bodies, but it helps me to remember that my body suffers more with inactivity and stress related to pain. Good luck and hope this helps somewhat.

[potterylady in reply to emmamom]

Yes, this really helps to hear your situation. Thank you. Do you have PMR or GCA or both? I really like your plan. How do we know if Actemra is not as bad for us as the prednisone? We do know prednisone is bad but Actemra is so new.....? It's wild how much a stressful event can trigger this illness. Hoping the best for you.

[emmamom in reply to potterylady]

I have both PMR and GCA. What I have been told is that we KNOW how bad prednisone is for your body when used long term and there doesn't APPEAR to be as much of an issue with Actemra. Of course, things might arise later, but we can only act on what we know now. I sorta feel like there is NO GOOD ANSWER for me/us, so I just try to get comfortable with what seems the least risky and focus on feeling thankful that I can use and move my body a lot (lots of good exercise) which is so good for my body. OH BOY do I know what you mean about stress! My daughter has had serious health issues and it makes it so hard to sort out my own and forces me to juggle my doses more than I would like. I hope you find a plan that makes you comfortable! Best wishes. xo

[potterylady in reply to emmamom]

My daughter also has health issues. Thankfully she's been doing a lot better lately. My younger daughter causes a lot of stress because she isn't responsible and makes pretty bad choices that put her in danger. It's a tough road and I've had to detach to a degree for my own survival. Motherhood!! Best to you. Thank you for your support.

[Dexter911]

I’ve been on for 4 years.. I Icame off pred. And was on weekly actmera before changing to every 2 weeks. All our needs are different and how we respond to different meds.

[potterylady in reply to Dexter911]

Wow, great you're off pred. Do you have both GCA and PMR or only one of them?

[Dexter911 in reply to potterylady]

GCA

[Dexter911]

what dose amounts have you been on and how do they determine which is correct for you and how do they monitor?

[Dexter911]

thank you for your information. Much appreciated.

[Dexter911]

yes live in Wales . Do you live in USA? You sound knowledgeable on the subject and access to experts!

[PMRpro Ambassador in reply to Dexter911]

Have you "just" got GCA? How did you get such long access to Actemra?

[Dexter911 in reply to PMRpro]

no had GCA nearly 6 years.. in September. Was diagnosed with temporal arteritis and went on Pred. .. I year later admitted fir emergency open heart surgery to mend dissection after aneurysm burst.. undiagnosed so lucky to survive thanks to a brilliant heart surgeon. Got off pred. Tried methotrexate but no effect so then onto Actemra.

Possibly due to large vessel involvement which they didn’t mention or check 6 years ago .. is why I’m still on it!

[PMRpro Ambassador in reply to Dexter911]

Lucky you!! Slipped through the net ...

[potterylady in reply to Dexter911]

Wow, yes lucky you survived that! You sound like you're doing great. Best of health to you.

[Dexter911]

yes appreciate every day! Try and do 10000 steps a day.. live by the coast and have a dog so out twice a day enjoying the views and outdoors lifestyle. Where are you in the US?

[potterylady in reply to Dexter911]

10000 steps a day!!! That's fantastic!!! Wow. You're my inspiration.

[Dexter911 in reply to potterylady]

Thank you for your kind wishes. I rest when I need to and pace myself but definitely lifts your mood and spirit when you’re out enjoying nature

[Dexter911]

Thank you..how do I find link??!!

[Dexter911 in reply to Dexter911]

thank you

[potterylady]

Hi Pottawattamie, do you have any side effects from the Actemra? Do you have PMR & GCA or just one of them? 12 long years on prednisone! That's terrible. I hope it didn't do anything bad to your body. Thank you so much for telling your situation.