Finishing with Actemra

[MarksPoint]

Hi everybody, once again I'm asking a question of you all before I see my Rheumo. In a few weeks I will have been on Actemra injections for 18 months. I managed to finish taking Pred 7 months ago after a 12 month stint with no relapses. I consider myself to be very lucky so far.

I would like to stop Actemra as soon as is reasonably possible, but I haven't heard anyone on this site - or anywhere else for that matter, who has ceased Actemra and what the criteria for cessation is.

Some of the side effects are deleterious to an existing heart condition that I have in that it has shot my low levels of cholesterol to high levels which is not really very good for me and the low levels of immunity always scare me.

I would be grateful for any opinions or experiences on this topic that you may have. Thanks again for being here and listening. Anne.

[SheffieldJane]

I was able to just stop. Others have moved to a fortnightly injection and then a monthly injection and then stopped - a little more gentle. I don’t think tapering is a big issue with Actemra. You just have to hope that it hasn’t been holding much at bay. It seems fairly unlikely after 7 months without Pred. Good luck with it, obviously always check with your doctor.

[MarksPoint in reply to SheffieldJane]

Thanks for telling me your experience. When you finally stopped Actemra were you having any GCA pain hits on your head? or had you been completely pain free for a while?

[SheffieldJane in reply to MarksPoint]

My GCA is non cranial , although I am prone to headaches, probably cervical Spondylosis. My pains when they occur tend to be arms and shoulders and leg stiffness when I rise from sitting. Possibly a lack of fitness and some osteoarthritis now.

[PMRpro Ambassador]

Some taper the tocilizumab, from weekly to 2 weekly and sometimes 3 weekly, sometimes in jumps, sometimes adding a day or two each time. You have to find what works for you. LemonZest11 did it the other way round, extending the gap between TCZ injections on a low dose of pred and then worked on the pred with 3 weekly jabs.

[nallufl24]

I too was on prednisone for only one year. I have been on Tocilizumab for 17 months. My rheumatologist claims I’m in remission so he halved my dosage and I’ll be off completely in October which will make it 22 months. I feel like my old self but I don’t know how he thinks I’m in remission. Of course my bloodwork is normal which is from the Actemra. Yes,I feel great but is it only from the Actemra? Anyway, I just have to wait and see. I’ll keep you updated.

[piglette in reply to nallufl24]

Rheumatologists are given a magic, glass ball which they can use to see the future. That is how they know if the PMR has gone away when we are still on steroids.

[Mayadill in reply to piglette]

Don't forget the timer - the 2 years are up

[MarksPoint in reply to nallufl24]

Our experience sounds almost identical from the GCA point of view ! I really want to stop Actemra but obviously don't want GCA to return. I am getting less and less GCA pain stabs in my head, in fact this past few weeks I have only noticed about one a week on average. Do you still have any GCA pain or have you been pain free and if so can you remember how long? Sorry for the questions but I know if I ask my Rheumo she won't have much of a clue because she has only had a handfull of GCA patients to learn from, whereas on this site there are hundreds if not thousands of GCAers. x

[nallufl24 in reply to MarksPoint]

Our experience is pretty similar. I stopped having GCA symptoms pretty quickly after starting Actemra. I use to get ice pick headaches where a stabbing pain would appear for a few seconds but those have been gone too for the past several months. I also had a lot of prednisone withdrawal pains for about 6 months. But right now I feel great. Like I said, whether it’s remission or Actemra I can’t tell you.

[MarksPoint in reply to nallufl24]

Thanks for that, I think by September when my present supply of Actemra runs out I will stop and 'see what happens' . Thank you for that. x

[Chrisellie]

Hello

I was on Actemra/Tocilizumab weekly injections for the maximum 12 months allowed for GCA in Scotland.

My tapering is in my profile. I stopped after 12 months without tapering. No side effects and no returned symptoms. Was off Prednisolone months before that. No additional medication either during or after.

Felt nervous at the time but no need. I was very lucky.

Hope this helps and best of luck

[MarksPoint in reply to Chrisellie]

That is wonderful to hear, I think you are the first person I have read that has had such a good outcome. I hope I can follow in your footsteps.🤞

[MarksPoint in reply to MarksPoint]

I also wanted to say your profile info and journey is amazing, thankyou.

[LetsLearn]

I’ve been off pred for same time as you and have finished Actemra because it’s no longer subsidised after 12 months. I’m now on 10mgs Methotrexate and being monitored. So far so good! My cholesterol was also high but I didn’t think it may have been caused by Actemra. Isn’t it the pits that the very drugs keeping us alive are also trying to kill us!! Hope it goes well for you!

[MarksPoint in reply to LetsLearn]

Thanks LetsLearn....it is so true ! I tallied up that I had taken 7,360 mg of Prednisone in the 12 months and very grateful that it saved my eyesight but there are definitely quite morbid costs that our bodies and minds have had to pay and will continue to pay possibly forever.

This is where research is more than vital.

[PMRpro Ambassador in reply to MarksPoint]

I have taken more like 40g in my pred career, 20g of it since the start of Covid I think. No lasting damage we can identify!

[MarksPoint in reply to PMRpro]

Wow that's a lot of Pred !!!!! So good that you are damage free, I cannot say the same however I know it could be a lot worse.

[PMR2011]

I have both PMR and GCA. I had been in Actemra just over 2 years, off Pred and feeling great when j had to stop the Actemra (kidney issues, which resolved). After 3 months off I started having symptoms again and markers went up. Went right back on Actemra with a short course of Pred to bridge it. Now back to every 2-3 wks Actemra and fell good again. You won’t know unless you try. The good news is it can be stopped and started much easier than Pred.

[MarksPoint in reply to PMR2011]

Yes I see what you are saying........I won't know until I try, and if I start to get mild pain back again I just go back onto Actemra. X

[LemonZest11]

Hi there MarksPoint, I've been off pred for nearly 5 months now and on Actemra for 3 years. I have spread my jabs to 3 weekly, due to neutropenia, and now I'm in the scary process of extending further. PMRpro suggested extending the space between jabs by a couple of days each time and I'm following that advice. Currently at 3.5 weeks. Rheumy wants me to stop when I get to 4 weekly, but I'll see. It's all guesswork at this point 🤞

[MarksPoint in reply to LemonZest11]

Thanks for the info LZ, I am currently doing something similar, but my main question is do you ever get any head pain that is reminiscent of before diagnosis, meaning something vascular is still happening? My little ice pick taps on the head have been diminishing for months now, approx 6 months ago I would feel them 3 or 4 times a day, now I might only feel them once or twice a week. However, I still feel that it is a tiny reminder of GCA and whilst I'm on Actemra all will be OK given time. My common sense tells me not to stop Actemra until I haven't felt one little stab for maybe 6 months, but on the other hand I really want to spend as little time taking Actemra as possible. That is why I would like to know if you and the others who have stopped all GCA meds were 100% pain free at the time of stopping. Thanks. xx

[LemonZest11 in reply to MarksPoint]

I don't have any GCA-LVV symptoms at all, haven't since pred got me under control and Actemra enabled the very slow taper. When I say very slow, I'm saying .25mg a time for min 4 weeks each reduction. If it were me, I'd listen to my body. If still having headaches then GCA might still be lurking. No need to rush at this point.

[SheffieldJane]

I was given a head MRI to look for signs of Vasculitis. Nothing was found.

[MarksPoint in reply to SheffieldJane]

I think I will ask my Rheumo for one in a couple of months time when I hopefully will be near my last jab. Thanks.