Want to know about Actemra

[confused2]

My Doctor is thinking of putting me on Actemra. I would like to know what other people think of this. Seems scary.

[PMRpro Ambassador]

If you use the search facility at the top right and type in Actemra you should get a list of past posts about it.

There aren't that many with experiences really as it is only used in the UK for resistant GCA and not at all for PMR. But there is a fair bit of discussion about it.

Why does he want to use Actemra for you?

[confused2 in reply to PMRpro]

My headaches have returned after tapering form 40 to 30 mg of prednisone and it is my second time that I have had headaches return and had to up the dose of prednisone to stop them. Last time I was at 50 mg and had to up to 60. I also had a stroke in December which is when they discovered the GCA.

I will see her next week to discuss this and want to have as much information as possible.

[SnazzyD in reply to confused2]

How long have you been held at the highest doses in one go?

[confused2 in reply to SnazzyD]

I was only on 60 for a little over a month. I was on each for a month. Started February on 50, then up to 60 in March and then back to 50 and down to 40 in June. I plan on asking her if I can stay on 40 for longer till I am stable and see what she says about that. I was very stable on 40 before tapering to 30.

[PMRpro Ambassador in reply to confused2]

By 40mg you are probably going to find 10mg at a time is too much - in tapering no reductions should be more than 10% of the current dose. That means 4mg - 5mg is probably possible.

[confused2 in reply to PMRpro]

Yes when I went from 40 to 30 I did it 2.5 at a time, however I only stayed on the lower dose for a week before lowering another 2.5. It went smoothly and I was at 30 for over a week before the headaches started. I was going to stay at 30 for a month before going to 25. Now I am back to 40.

[PMRpro Ambassador in reply to confused2]

You need at least 2 weeks at any new dose - and preferably a bit more. You have to be sure the new dose is still enough - and moving the goal posts too often confuses your body too.

It may sound slow - but it isn't when it works.

[confused2 in reply to PMRpro]

Yes I realize that. but I felt going one week at a time down 2.5 as opposed to my dr. schedule of down 10 all at once was maybe better.

[enan-illuc]

Confused2,

I have been on Actemra/Tocilizumab for over two years and have not had a problem. It is not a cure for GCA or PMR but it does help in tapering the Prednisone. I have not had any side effects yet and it does help me. I am at 2.5 mg of Prednisone down from 60mg. I hope this helps.

[confused2 in reply to enan-illuc]

Thanks you so much. Just. what I needed. Some one who has been there. Will let you know when I see my Dr next week. Want to go with lots of info.

[broomfield28 in reply to confused2]

I too had difficulty reducing to lower dose Prednisolone and put on Actemra. I have been on it 13 months so far with no problems. I understand your reluctance but sometimes you have to give it a try. I’m now down to 4.5/5 mg Pred. and wondering what’s next! Good luck.

[confused2 in reply to broomfield28]

Thank you so much for your reply. I usually don't post but just read and then I thought I need to have some more information and what better place to get it.I am staying away from reading side effects of the drug and will just listen to my Rheumatologists ideas when I see her as well as people who have actually had experience.

[PMR2011 in reply to confused2]

I have been on Actemra for 1 1/2 years and came off Pred in Feb. GCA diagnosed May 2017 after 6 years if PMR. No side effects from Actemra other than mild headaches when I first started, resolved by keeping well hydrated. It is an immune suppressant so need to be very careful avoiding germs, no cleaning out of cellars it attics!, good hand washing and no sick visitors!

I give myself a weekly injection, no big deal. It is very expensive, but the company has an assistance scheme so it cost $5 a month out of pocket. You will still need to go slow with Pred tapering. I managed 2.5mg every 2 weeks until at 10mg, then 1mg every 2 weeks to a month. Good luck!

[enan-illuc in reply to confused2]

Confused2,

I think your plan is good. I was very lucky to have a great Rheumy. The cost can be high but Genentech has some programs that may help you. Good luck with your Doctors vist.

Enan

[confused2 in reply to enan-illuc]

I don't know about the cost. I live in Canada and have insurance that may cover some of it. Will have to wait and see what the Dr says. I am a senior and some of or drugs are covered.

[Jim-CJ]

Hi Confused2,

Don't be scary. My wife, who has GCA, has been on Actemra (weekly injections) since February, 2018. Actemra has allowed her to taper to 4mgs from 60. With no flares or side affects. A wonder drug, but expensive.

Go For It, If Your Dr. Thinks It Would Be Good For Your Case,

Jim & CJ