Stopped Actemra, new questions

[potterylady]

Hi community,

I decided to stop Actemra after 1 year so I am not on so many drugs. I was concerned about the risk of infections, diverticulitis, etc. I figured that so many people have done this with only Prednisone, that I can too. Here's what has happened since.

I stopped Actemra 1 month ago. I thought it was mostly used for GCA not as much for PMR, but I've had less headaches (still get some) but worse hip upper thigh inflammation which makes walking painful after being on my feet for a long time or walking 20-30 minutes. My shoulders seem good so far.

When I stopped the weekly shot, I was taking 27.5mg of Pred. I'm working my way down slowly to 25mg currently. I'm 2 months into my 2nd year of PMR & GCA.

What was your typical Prednisone daily dose during your second year of PMR & GCA without Actemra?

Did you have any bad effects after stopping Actemra?

Is Actemra mostly prescribed for GCA or PMR or both?

As always, thank you 🌺

[piglette]

Actemra is normally only available for GCA in U.K. not PMR and then it’s limited to one year.

[potterylady in reply to piglette]

Thank you for clarifying that.

[SheffieldJane]

I managed to swift taper from 40 mgs to 10 mgs with the help of Actemra. It didn’t seem to help me get lower. I didn’t experience anything like withdrawal. I am now at 5 mgs and finding getting lower is difficult. I have GCA/LVV and my symptoms tend to be non specific and constitutional. I am glad I wasn’t on high GCA Pred doses for long. I have developed painful diverticulitis though.

[potterylady in reply to SheffieldJane]

5mg sounds like a dream to me. How long did you take Actemra? I'm sorry you're dealing with diverticulitis. I too tapered down with the help of Actemra, but then I flared and had to go back up to 35mg, so had to start over.

[SheffieldJane in reply to potterylady]

For about a year. I still have some in my fridge, I associated it with lower abdominal pain. I haven’t really felt well since which may be coincidental.

Actemra does not work for everyone.

[potterylady in reply to SheffieldJane]

Yeah, well it does warn of diverticulitis. It made me really constipated with black tarry stools as the warning says. It hurt so bad when my bowels moved through my intestines that I was worried about something tearing. I have some in my fridge too.

I hope you can somehow start to feel better.

[DorsetLady PMRGCAuk volunteer]

As piglette says most people in UK are only on Actemra for 12 months [and then only for GCA not PMR so not that many], so you’ll need to wait for others around the world to reply to that.

But they are a lot of us that got through GCA successfully without even a sniff of it. 😊

[potterylady in reply to DorsetLady]

Yes, you are my inspiration because I knew you had this before the shot was invented. You made it through, so I wanted to too. I feel that the Actemra wasn't helping me much and better to get off it and cut my risks for other problems / side effects. Thank you for your reply

[PMRpro Ambassador]

It depends on the country - it is not allowed for PMR at all in the UK and only for a year as yet for GCA in the UK. In some EU countries it is used for GCA without such limits. Here in Italy it would be available on application for PMR but is unlimited for RA and some rheumies who want to use it for complex PMR adapt the diagnosis.

Even with Actemra, a sensible taper is needed because it can take some time to work, It also only works 100% for about half of GCA patients, there are at least 3 different underlying causes of the inflammation and Actemra only works for one of them, the one involving IL-6.

Unfortunately, it appears that some US rheumies who use it because they can, don;t actually know a lot about how it works. Or even how flares work when they are due to precipitate reduction of pred. You rarely need to go back to the beginning, adding 5-10mg to the dose where you flared is mostly enough.

Your hip and upper thigh pain sounds like greater trochanteric pain syndrome. That is inflammation of a bursa, worsened by certain activities like walking and stair climbing. It isn't well managed with oral pred as the level around the inflamed tissue isn't high enough. Injections work brilliantly, another excellent option is extracorporeal shock wave therapy although it takes a few sessions.

[potterylady in reply to PMRpro]

Great information here, thank you. Perhaps the Actemra didn't work for me because my flare wasn't under control until I took 35mg, up from 12.5mg. I'll look into trochanteric pain syndrome. Very possible issue. I'll look into injections and shock wave therapy. Thank you so much!!!!

[PMRpro Ambassador in reply to potterylady]

I'm not sure that is the answer - Actemra is very powerful at what it does. What is more likely is that it wasn't IL-6 causing the flare. It is known that there are other underlying causes of the inflammation in GCA, the same must apply for PMR. Actemra only deals with IL-6 - it is that specific. Pred deals with many different causes of inflammation - I suppose you could say Actemra stops that bit before it starts, pred mops it all up irrespective of what,

[potterylady in reply to PMRpro]

Hummmm it seems mine isn't the IL-6

[PMRpro Ambassador in reply to potterylady]

That IS what I suspect.

[potterylady in reply to PMRpro]

My doctor has no idea about this information. I'm sure not many do.

[PMR2011]

Actemra has worked a charm for me. On it for both PMR and GCA. Have not had any significant side effects. Been on it almost 4 years. Been off Pred completely for 3 and feel great. I’ve tapered the Actemra and find that once every 3 weeks injections work for me and reduced risk of side effects.

[potterylady in reply to PMR2011]

That's great! You've managed to not be on so much medication--so good. I wasn't able to reduce the pred much with Actemra. I did reduce the first year, but then had a flare that sent me back up to 35mg. Been trying to reduce ever since, but not able to go quickly. Another reason I stopped the shots.

[pmac22]

I had to stop Actemra last May because of diverticulitis. I was just getting down below 5mg prednisone and had a horrible diverticulitis attack, in the hospital 5 days. Was just changing rheumatologist who said I should not have been on Actemra because of my previous diverticulitis. She said it is her drug of choice and had much success with GCA as a steroid sparing agent but their is a black box warning and she takes it seriously (my other rheumatologist did not) She put me on methotrexate, which makes me feel awful. My inflammation markers are slowly creeping up and I’m back upto 10mg of prednisone. I was to have a Sigmoidectomy two weeks ago to remove a very week are of colon from diverticulitis but two days before surgery my back went out, horrible spasms for 3 days. Surgery is now November 10.

This is all so frustrating and scary. I felt so much better on Actemra and lower prednisone. Now I feel exhausted everyday, depressed, worried about upcoming surgery, which will also postpone travel plans. It’s just one thing after another with this GCA.

My rheumatologist said there is another biologic injection she may try after the surgery that may work better than methotrexate. Until then I’m to stay at 10mg.

[potterylady in reply to pmac22]

Oh my gosh, that's awful! Wow, I wonder if 10mg is enough after stopping Actemra and feeling exhausted? I hope you get this all sorted out. It's a complicated mess you've got. Wishing you the best.

[LemonZest11]

Hi potterylady, I've had PMR/LVV for 5 years and initially struggled to reduce pred. My Rheumatologist put me on Actemra nearly 4 years ago and it has been a life changer for me. I have been off pred for nearly 7 months now, and I have tapered the injections to 4 weekly. My Rheumatologist wants me to stop the Actemra but I'm wary after stories I have read on here. I am subsidised by Roche (can only have Actemra for 12 months in Australia), and they have just renewed my scripts so I will press on for a while before the dreaded cease altogether.

[SheffieldJane in reply to LemonZest11]

It is good to have a positive update from you. What specifically is worrying you about ending your Actemra?

I would feel home and dry. Do you still have any symptoms?

I hope you can disappear into the sunset, as if this episode had never happened. X

[LemonZest11 in reply to SheffieldJane]

Hi Jane, so lovely to hear from you. I don't exactly have symptoms but I am not the girl I was before this episode. I am weakened and a bit stiff, but no pain. I imagine it's just my body having aged over the journey but I am also wary of the dripping tap. I thought I would wait another 6 months or so, just to be sure, although I realise I can never be sure, and since I have the supply of TCZ, why not? But I am well, and grateful for what might be a positive outcome. It sounds like you are managing on 5mgs pred. That is positive and augers well for the future. I really hope things continue smoothly for you. Xx

[SheffieldJane in reply to LemonZest11]

Good luck with it. I think you are being sensible. I expect at least a year of getting right again after stopping and I think it will take some effort. I have become quite demotivated and lazy about diet and exercise. I 🤔 I have done my time already.

[LemonZest11 in reply to SheffieldJane]

Yes, I hear you. Keep going, there is hope for all of us, and you are due for some good news. Sending Downunder love ❤️

[SheffieldJane in reply to LemonZest11]

Thanks for that! My grandaughter has successfully auditioned for a play in Coffs Harbour over Christmas ( age 10 ) and my grandson is giving piano recitals for his very good school ( age 9). My littlest grandson has won a football trophy ( age6). My eldest grandson ( aged 14) has asked for weights for his birthday - so watch this space! The good news I live off. Downunder is nurturing them alright. Xx

[LemonZest11 in reply to SheffieldJane]

Time for another visit! ✈️🌞

[SheffieldJane in reply to LemonZest11]

December for 6 weeks. 🙏😊

[LemonZest11 in reply to SheffieldJane]

👌😘

[potterylady]

Wow, that's so great you've gotten off the prednisone. And just one shot every 4 weeks is great too. I wonder if your PMR / LVV is gone now? Yes, so scary to stop medication because we know how bad it can be when this disease comes alive again! Thank you for sharing your experience, it helps. Wishing you good health!

[LemonZest11]

Yes, going well thank you. And I hope your journey progresses along a gentle pathway. 🙏