Tocilizumab arrived at last! Do I need a new taper plan?

[Jonimoroni]

Just in case anyone else is 'in-waiting" - I was prescribed TCZ back in July, after a flare, and was expecting to start the course in August, but it didn't arrive - due I believe to supplies being diverted to Covid patients in ICU's. However, supplies arrived yesterday (05/11/210 ) and I'm expecting to commence taking it next week, after a 'how-to-use-lesson'.

I'm having a problem with seeing how to make a tapering plan going forward for Pred now - I was at 5mg before flare, and new plan was made in July with expectations of TCZ starting concurrent with newly prescribed increase to 40 mgs. Though TCZ didn't arrive I went along with 40-30-20 mg on new plan, . Tried lower (as per plan - its now around 16 weeks, plan would have me at 10mg) but symptoms returned markedly at 17.25, so stopping at 20 mgs for now. TCZ prescription looks like 48 weeks . Can't find a plan (on Steroid Taper Application on steroidtaper.azure.net -) that looks like it would be a good fit...but my brains are like stovies (mince & tatties!) just now. I have Rheumies telephone appointment in a months time, no doubt he will give me a plan, but he is inclined to go faster than I would like...Should I look for a 48-week, 20mg to zero plan, or should I be aiming to be at zero sooner? ( I'm assuming TCZ may not be available longer term, but I don't know that ..) any advice or experience gratefully received!

(see my just-updated profile for more details if you like)

As ever, thankful to you all .

[PMRpro Ambassador]

If it were me I'd be in no desperate hurry - some people find it takes a few weeks to really start to work. If you are getting a lesson in adminstering it from the rheumy nurse - they may also have instructions for the reduction.

[Jonimoroni in reply to PMRpro]

wise words....If there's one true thing about this condition, it really is 'Don't be in a hurry"! Learning!

[PMRpro Ambassador in reply to Jonimoroni]

It will be much faster with the TCZ but even with it, only half of patients get off pred altogether as IL-6 is only one of 3 ways inflammation is created in GCA.

[Jonimoroni in reply to PMRpro]

I'm sure that earlier I saw your writing on exactly that in reply to someone - possibly Dad2Cue - just trawling about for it now. I knew I shoulda bookmarked..

[PMRpro Ambassador in reply to Jonimoroni]

More than likely - some things are fixed in my typing fingers

[Jonimoroni in reply to PMRpro]

found it! a link you gave in a reply to Deepthought2 -bmcrheumatol.biomedcentral.... Thank you! ( I fall down sooo many interesting rabbit holes on this site, and often can't remember just where it was - Lucky this time!

bmcrheumatol.biomedcentral....

[Sharitone]

Thanks for the info re the waiting time; it's useful to know. The leaflet I was given about TCZ says 'if you respond to TCZ you'll probably feel better in 2-12 weeks, most likely within six weeks', which concurs with what PMRpro says about giving the taper some time at first. I hope it works for you!

[Jonimoroni in reply to Sharitone]

Hi Sharitone - Thanks for reply! Are you waiting for TCZ too?

[Sharitone in reply to Jonimoroni]

Yes, but a long way behind you!

[Jonimoroni]

Thank you ! That makes me feel hopeful - and very glad for you!

[LemonZest11]

My Rheumy wanted a fast taper but I stood my ground ... 0.5mg per month down to 3mgs, 0.25 after that, alternating for a week and then 3 weeks at each new dose down to .5mg. At the same time, the TCZ was stretched out gradually to 4 weekly. Something was not right at this point, had a mini flare so back to 4mgs, 3mgs and now on 2mgs where I'm staying. TCZ is 3 weekly. Will try to ween off TCZ slowly and see where I am after that. Trial and error, we're all different, but it definitely helped my taper. 🤞for you.

[Jonimoroni in reply to LemonZest11]

Thanks LemonZest11- great detailed information there, beginning to feel I have something to go on with all this knowledge on the forum! My rheumy too wants faster tapering than I do, but accepts whatever I’ve done - GP on-line dispensing whatever Pred amount I’ve requested has been good so far, and allowed me to stay in control. Is your TCZ limited to 1 year as here ( UK)? Overall, sounds like TCZ has been right for you

[Happyexplorer]

I start TCZ next Thursday and my Rheumo gave me a written taper suggestion of reducing by 5mg each week from 40mg until I see her again in 5 weeks. Based on others' comments, this sounds very fast! I'll proceed with caution and look forward to hearing how you get on too 🤞😊

[Jonimoroni in reply to Happyexplorer]

Thanks for your reply ! We will be starting TCZ in the same week, so it will be interesting to follow your journey! Do you know how long you can have TCZ for?

[Happyexplorer in reply to Jonimoroni]

Hi Jonimoroni, Just waking up here in Sydney. I am getting TCZ on private script, but if you get it on PBS(NHS) it is only subsidised for 1 year. I hope to apply for this if it works, even if it means another expensive PETscan. I missed the criteria for subsidised script as the Rheumo wanted to try other drugs first due to the stock situation. Good luck...let me know how you go!🤞😊

[Constance13 in reply to Happyexplorer]

And we're just going to bed in Europe. So strange to think people are just beginning their breakfast.

[Sophiestree]

I certainly wouldn't taper any faster, it might take the TCZ three months to kick in. I certainly wasn't able to reduce that quickly after starting it and had several stages where I had to go back up with pred. I do think long term though that is has enabled me to get to where I am now so I am grateful for that. But my tapering now is .5mg every 5 weeks with DorsetLady's play. I started at 40mg in Oct 2020 and am reducing from 9 to 8.5 at the moment. But am certainly not rushing anything. If I feel I need to up the dose I will.It's good it arrived finally. Just remember you may not feel any instant effect, but give it time.

[Jonimoroni in reply to Sophiestree]

Thank you for reply, Sophie’s tree - it sounds like you’re having a good outcome from TCZ. I’m taking on board the ‘continue going slowly, see how it works out’ message. My GCA journey started about the same time as yours, and ( following consultants tapering plan) I’ve been down to 5mg (May) - then a flare and back up to 40mg. I don’t want to repeat that, so will insist on a slower pace in future even if Rheumy would prefer faster. I’ll see him at the 4 weeks in point of TCZ, so will see what’s recommended , it’s so much better to go in with some knowledge-so 🙏

[Rugger]

As the others have said, we're all different in how we respond to our treatments. TCZ gave me an almost immediate increase in energy!

My Rheumatologist gave me a precise taper plan, but always with the proviso that I could get back to her with any issues. I flared at 1mg, so went back to 5mg, where I stayed for 8 months (during Covid times). I'm now on 2.5mg, tapering at 0.5mg / month using the DSNS taper and weekly TCZ.

In England, TCZ is limited to one year's allocation, so you might get 52 weeks! Those of us that were prescribed it prior to, or during Covid, have an extension to March 2022, but your year should go to November.

Best wishes.

[Jonimoroni in reply to Rugger]

Thank you for great information Rugger - I hope to have the successful journey you’re having! I see I needn’t change my taper, just carry on slowly and see how it goes. Hope you have continued success - 2.5 mg seems like a triumph to me!

[Moomin8 in reply to Rugger]

Hi, I was just reading this post...and was really surprised that we're only allowed one year on Tocilizumab! I'm about to start it - when it's delivered and I've had a nurses visit. I've had a variety of biologics before - I stayed on Cimzia for a few years. Why is it that Tocilizumab is limited to one year? I have RA.

[PMRpro Ambassador in reply to Moomin8]

Ask NICE - they decided on the time limitation. It is possible your rheumy could claim the TCZ is being used for the RA too - then there wouldn't be the time limit. Which I think is appalling - and discriminatory. They may rethink it - but it is probably because in the clinical trials half of patients were off pred entirely in a year.

[Moomin8 in reply to PMRpro]

Thanks 😊

[Moomin8 in reply to PMRpro]

I have a letter which says that if after 6 months there is no benefit, then it won't be considered going forward.

[Rajuguide]

My wife diagnose GCA, 4 months back started with 60 mg prednisone and weekly actemra from last 3 months .dr advice her to taper prednisone slowly ,she went little comfortably Till 10 mg ,but she got flare twice at 10 mg and have to go back 12.5 .in my wife case everything did not went so smooth with even with weekly acterma .

[Jonimoroni in reply to Rajuguide]

Thanks for reply Rajuguide - it sounds like a very fast taper, going from 60mg to 10 or 12.5 in just 4 months! I do hope she is feeling ok?🤞

[Sophiestree in reply to Rajuguide]

I think that is where I struggled around the 10mg mark, went back up to 12.5 twice. But then decided to only do half a mg (0.5mg) from then on and it seems to have worked a lot better this time. Maybe try something a bit slower regarding the dose.