Tocilizumab Tapering

[christine2715]

I have been on TZ for 4 years and have cut my Predisilone down to 3mg. I think I may be in remission from GCA and wonder if anyone has experience of coming off Tocilizumab. I am now taking it 4 weekly and wonder whether to go to 5 weekly. If successful could I then simply stop taking it. I inject myself. I originally started weekly injections helped by Mycophenelate which I stopped several months ago. I would appreciate any help. With all good wishes to the lovely people on this site.

[PMRpro Ambassador]

Have you not tried coming off pred altogether? And very curious to know how you managed to get 4 years of TCZ for GCA in the UK?

[christine2715 in reply to PMRpro]

I was on the original drug trial.

[PMRpro Ambassador in reply to christine2715]

Ahhh ...

[Rugger]

I came off TCZ after 2 years. I had no choice because of the funding issue, which did give me 2 years instead of one, due to the pandemic. For the last few months I injected every 2 weeks, but then had to stop when the supply ran out. By coincidence, I was tapering the pred at 0.5mg a month and reached zero pred at the same time as zero TCZ!

I might have 'risked' being on no medication at all for my PMR & GCA-LVV, but my Rheumatologist has decided to play safe by starting me on Methotrexate - maybe for a year, to see what happens. So I have been on MTX alone for the past 4 months.

PMR since 2016

GCA-LVV since 2019, or earlier maybe.

[Kafkaontheshore]

Hi. I would liaise with your rheumatology team. I would also think it wise to come off pred whilst still supported by Tox. Good luck

[Chrisellie]

I had the 12 month course and then stopped. All details in profile. Been off it for over 2 years. PMR GCA LVV

[GCAYme]

Christine, I am in US, been on TCZ 6 months with very little side effects. Down to 6 mg prednisone. Just met with my Rheumatologist and he definitely wants me off Prednisone before even considering reducing my Actemra. He expects I will be on the TCZ 3-4 years as it seems you have been. Definitely taper off the prednisone before considering tapering the TCZ.

[Blackcatlover]

I have been on Actemra for four years. I am currently on 4mg of prednisone. I saw my rheumatologist this week and he believes I should stay on 4mg of prednisone and stop the Actemra cold turkey. I’ve had PMR for almost 7 years. He keeps his patients on low dose prednisone while eliminating the Actemra and he is okay with me being on a low dose for many years and perhaps forever. It’s been four days and every morning I wave my arms around to check for pains🥴. I have to tell you it’s very scary after having been on Actemra and prednisone for so long and then eliminating the drug that allowed me to get to 4mg. He says it’s much safer to be on low dose prednisone than Actemra with all its possible side effects. Hope this helps. Good luck.

[PMRpro Ambassador in reply to Blackcatlover]

"He says it’s much safer to be on low dose prednisone than Actemra with all its possible side effects"

The range of opinions widens daily!!!!

[LemonZest11 in reply to Blackcatlover]

Hi Blackcatlover, what are "all the possible side effects" of TCZ your Rheumatologist speaks of? What side effects have YOU experienced? Never heard that pred is safer than TCZ, we take it to reduce/get off pred!

[Blackcatlover in reply to LemonZest11]

I have to have lots of blood tests every three months to check liver and kidneys, white blood count is low, raises blood pressure, blood sugar and cholesterol. You are prone to urinary infections and your immune system is depressed making infections more serious. Lymphoma is another possibility. Just google it and there are many more side effects. I personally have had increased blood sugar and cholesterol, four urinary track infections and various blood markers that were out of normal range. I could never get below 15mg of prednisone and high doses of prednisone are problematic too that’s why I chose to take Actemra to reduce my prednisone below 5mg. My goal was not to get to zero but to get to a low dose that controlled my PMR symptoms. It took a long time but I’m hopeful that’s where I am now.

[PMRpro Ambassador in reply to Blackcatlover]

OTOH - look at the list of potential adverse effects of paracetamol/Tylenol ...

It is a biologic immunosuppressant - of course it has potential nasties ...

[Blackcatlover in reply to PMRpro]

I know and I still chose to take it to reduce not eliminate my prednisone. I still think low dose prednisone is safer than Actemra. This disease just doesn’t want to let go of me. I feel safer and healthier on just 4mg of prednisone. If this doesn’t work I will go back on Actemra.

[PMRpro Ambassador in reply to Blackcatlover]

My rheumy is only aiming for 5mg at best and if I had been significantly under 10mg I doubt I would have been so keen to try but the dose was climbing slowly but surely. I know it's been a bad 2+ years - but I admit I didn't expect things to get worse!

[Blackcatlover in reply to PMRpro]

That’s exactly the way my disease was progressing. I never made it to 10mg but got to 12mg and then began climbing again. I even tried Methotrexate for six months. I’m hopeful that the Actemra will get you to 5mg. I had a few bumps on the way but I’m still waving my arms around to check for pains and after5days, so far so good. My rheumatologist is doing a Sed and CRP test every six weeks just to make me feel better. 🥴

[LemonZest11 in reply to PMRpro]

What dose pred are you down to now, PMRpro?

[PMRpro Ambassador in reply to LemonZest11]

10mg and most of the aches are the left-over add-ons! Which are lessening ...

[LemonZest11 in reply to PMRpro]

That's great news! 👍

[LemonZest11 in reply to Blackcatlover]

My only side effect from TCZ has been neutropenia, which I can control by 3 weekly jabs, rather than weekly, and so far, it remains effective. Pred has caused so many more issues for me so I am relieved to be down to 1mg. I guess we each have to choose our own path, as much as we can.

[LemonZest11]

Hi Christine, I would suggest, like others, that you see if you can get off pred before you stop TCZ. That is the main purpose for taking it. I have been on TCZ for around 2 years now, three weekly jabs. I'm down to 1mg pred and taking it very slowly. If I can get off pred all together, I will remain on TCZ for an extended period. If I can't get off pred altogether, I will attempt to stretch out the TCZ further, and stay at 1mg indefinitely. It's all trial and error with me. See if you can reduce pred further before stopping TCZ 🤞

[christine2715]

Many thanks for all the replies I have received. I think I will get the Pred down to 2mg before I bring down the TZ , mayhe 5 weekly before I stop it altogether. Having had this illness on an up and down basis for over 5 years I am always fearful of any negative change might bring. I really want to get the pred down as I am so overweight taking it and find dieting on Pred difficult.

[LemonZest11]

Well I did say "as much as we can". Noone chooses to have a disease, but we do have control over how it's treated. 🤪

[PMRpro Ambassador in reply to LemonZest11]

To some extent ...