Tapering Pred, on Tocilizumab,

[Jonimoroni]

Hello dear experts! I finally received my TCZ injection pens after some months delay - I will take my 7th dose ( 48 prescribed) tomorrow. I was on 22.5 mg Pred at the start of TCZ, and have tapered to 15 today over those 7 weeks. Rheumy advised going to 18.5, then 15, in 2 x 2-weekly steps. This seemed a bit drastic to me - due to past experience which was only helped with the ‘go-slower’ advice on this forum - so I actually tapered by just 1 mg per week over the past 7. Tomorrow, according to plan, I should drop from 15 to 10 mg. - and to quote his letter “ then perhaps we can reduce the dose a bit faster” …..I will admit - no severe problems over the past few weeks, so Im hoping the TCZ is doing it’s work. I’m to have plasma viscosity checked after 2 weeks on 10mg.

So - Would your advice be to take the drop 1 or 2 mg at a time, or go for the advised 5mg drop? Im not sure how much TCZ affects the go-slow advice….

Avoiding a painful flare is paramount - been there done that. Awful.

Thanks for all help and advice.

[PMRpro Ambassador]

TCZ replaces the go-slow advice. It stops the inflammation developing so you no longer need the pred to combat it. Half of patients are able to get off pred altogether because the TCZ combats all of the inflammation caused by the IL-6 cytokine by stopping it altogether. There are 2 other mechanisms of making inflammation in GCA which TCZ doesn't work on and if your GCA involves one or both of those then there is some inflammation left that requires pred and those patients need some but a much lower dose of pred - 8-10mg is a common amount. You can reduce quite quickly down to 10mg - after that you may need to go a bit slower to allow adrenal function to return, the TCZ lets you get to a low dose of pred which is the only way to stimulate the adrenal glands to work again but it doesn't speed that process up at all.

[nallufl24 in reply to PMRpro]

Thanks PMRpro. My doctor has me on a fast taper because I started acetemra infusion last week and I’m a little afraid but I think you cleared it up a little for me

[PMRpro Ambassador in reply to nallufl24]

I do worry a bit when they start the reduction straight away - I'd have thought a few days to let the TCZ work first would be better but hey-ho - they are paid to make the decision! It also depends a bit on how long you have been on pred and at what dose. If the symptoms were well controlled by a higher dose of pred then the taper should be fine. If it isn't - just stop reducing for a week and see what happens.

[Jonimoroni in reply to PMRpro]

Thanks PMRpro. - feel a lot more confident after reading this - will try the nose-dive to 10 and see what happens.

[Jonimoroni]

Wow- you’ve certainly been through the mill - there’s a lot of experience there. Thank you for putting it all down. Taking on board what PMRpro says re:TCZ replacing the go-slow advice, and hearing of your success with it, it seems right to follow the Rheumatologists directions and go straight to 10 - at least until I get signs that something is amiss. I hope your present success with Biologic#2 continues !

[SheffieldJane]

Shortly after my GCA diagnosis I was prescribed Tocilizumab injections, weekly. At that time I was taking 40 mgs of Prednisalone. I was able to reduce to 10 mgs quite rapidly with no ill effects. When I attempted a further reduction I experienced a return of PMR type symptoms and headaches. I have managed to get down to 8 mgs of Entric coated Prednisalone, 7 mgs was a step too far. I am currently being hampered in my reduction by repeated minor infections and pausing Tocilizumab. I have been advised to try fortnightly injections because of this side effect ( eyes, nasal, UTI, and gum abscess). I am hoping to try to reduce again in the new year. I am still grateful that I reduced my steroid burden somewhat. I have developed hypertension, raised blood glucose and cataracts from long term steroid use. It is quite a battle.

[PMRCanada]

Sadly TCZ not an option for PMR in Canada. I’d rather try that biologic than methotrexate, but no option here.

[Rugger in reply to PMRCanada]

TCZ is not an option for PMR in the UK either. It is used for GCA, but in England it is restricted to an allocation of one year. Due to Covid, they have extended the deadline to March 2022, giving some of us 2 years+. I am seeing my Rheumatologist in February 2022 to discuss what to do when I stop TCZ - I know she is keen on Methotrexate!

[Sharitone in reply to Rugger]

Unless you have Takayasu's, in which case it is not limited

[PMRpro Ambassador in reply to Sharitone]

I wonder what they do for Takayasu's patients when they get to 50? Someone onthe forum noticed the dx on her notes had been changed to GCA and asked why: it is GCA when you are over 50!!!!

[Sharitone in reply to PMRpro]

Astonishing! does that mean myopia can automatically mutate into macular degeneration? Makes almost as much sense!Btw, I happen to know that the Takayasu's diagnosis is used quite freely, in view of the above.

[PMRpro Ambassador in reply to Sharitone]

Technically, TA and GCA are almost the same, histologically speaking, although TA affects a lot more organs than GCA usually does. But it did seem a very strange concept that it morphs into another diagnosis on your birthday - about as crackers as you can have PMR at 50 and one month but not 49 and 11 months ...

[LemonZest11]

Hi Jonimoroni, don't be afraid of a rapid reduction to 10mgs. After that, much to my Rheumy's "amusement", I went slowly all the way to 0.5mgs, where I flared. Probably the fact that my TCZ had been pushed to 4 weekly, after some time on 3 weekly jabs. Follow your Rheumy's instructions, mine sorted my flare very quickly and I am currently on 2mgs pred, tapering the TCZ because we can only have a limited supply in Australia, and hoping to survive on 2mgs indefinitely if my TCZ taper is successful. Good luck to you, getting to the lower levels of pred (5mg and below) is apparently pretty safe, and it feels great. 🤞

[Jonimoroni in reply to LemonZest11]

Thanks for a brilliant positive response LemonZest11! Like you I’ve been fortunate in my Rheumy, and now feel I can go forward with his advice- thank you! X

[Sharitone]

This is confusing, because I was told when I started TCZ, on 15mg of pred, to taper very slowly, 1mg a month. Maybe it's because you're n a higher dose?i was surprised, because before I was on TCZ, I was always told to educe much faster, with unsurprisingly poor results!

[Sophiestree]

Hi, I just had a look at my drug chart and I started TCZ on 15mg, dropped to 12.5 for 2 weeks and then 10 for a further 2 weeks. But see that I went straight back up to 12.5 due to symptoms returning. I struggled a lot in the 12.5-10 area and then further. At that point I went with DorsetLady's tapering plan but only by .5mg each 5 week stint. Sometimes staying a further week or two at the end if I wasn't completely convinced.So to cut a long story short since January 2021 when I was on 15 I have got to 8.5mg

I am very happy with that slow reduction. Don't push it at all, stay an extra week or two at certain doses if I'm not sure and feel it certainly suits me.

So, what does all that mean, I guess take it slowly and don't rush, you may find it just bites you on the bum if you do. Good luck.

[PMRpro Ambassador in reply to Sophiestree]

Definitely shows that TCZ doesn't guarantee a fast reduction will work!

[Sophiestree in reply to PMRpro]

Exactly that...

[GcaSuffer]

I’m just in 5th week of TCZ, but wonder what the other biologic is. Please tell me. Thank you

[DorsetLady PMRGCAuk volunteer in reply to GcaSuffer]

Humira I think, if you scroll further down you’ll see it mentioned by Dad2cue

[PMRpro Ambassador in reply to GcaSuffer]

Humira is not recommended for PMR/GCA since it does not target the primary underlying cause of the inflammation in these conditions - which is the IL-6 cytokine. Humira is an anti-TNF agent - and biologics are very targeted.