Tapering on Tocilizumab (Altrema)

[Charkha]

Hi again everyone, a lot has happened since I last asked a question. a new rheumatologist came to the city where I live in Texas so I was able to get an appointment much more quickly than scheduled. I really like her and she seems to know a lot about GCA. She is starting me on Tocilizumab (Altrema) this week. I have been on 40 mg prednisone for the last two weeks, having tapered from 45 mg two weeks before that. She is suggesting that as soon as I get the Altrema I can go down to 37.5 mg or 35 mg. I am inclined to do the 37.5 mg as one time I decreased (of course without the Actrema) I relapsed. My question is: is there a typical tapering schedule on Altrema that allows you to taper much more quickly than the slow taper on prednisone alone. I am sure she will advise but I would be grateful for your input. I looked up the posts on Altrema and they were encouraging in indicating that people did get off prednisone more quickly but didn’t mention a typical tapering schedule if there is one. I have to lower the prednisone as rapidly as I can as, among the other major side effects I am experiencing, the increased muscle weakness in my legs is adding to the weakness I have from being in a wheelchair with MS and making it impossible to lift one of my legs at all so transferring out of the wheelchair is even more difficult than it was. I am so grateful for all of you who are such a help and encouragement to all of us. Sending warm wishes from sunny Texas (although it is 5:30 in the morning here right now so not sunny just yet!)

[PMRpro Ambassador]

The typical tapering schedule for Actemra alongside pred takes about 6 months from high to low dose - in the clinical studies there were 2 I think, for 6 months and 12 months.

This is the full report:

nejm.org/doi/full/10.1056/n....

where they say

"The prednisone dose was tapered weekly in all the trial groups as determined by the protocol. Doses of 20 mg or more per day were administered in an open-label manner, but when the prednisone dose was less than 20 mg per day, patients and all the trial personnel were unaware of the dose."

so that suggests to me possibly 5mg per week (I haven't looked for the stuff in the protocol) at the higher doses and slowing below 20mg. There is no adrenal component to worry about until you are about 10mg so the speed isn't a problem there.

Only half of patients were able to get off pred altogether even with Actemra and if I remember rightly, they got stuck at about 8-10mg. This is because there are 3 different mechanisms creating inflammation - Actemra can only deal with one of them as it is so specific in its action. Pred works for them all. So there is a lot of sense to slow down when approaching 10mg.

[Charkha in reply to PMRpro]

Thank you so much. This is very helpful.

[Chrisellie]

Hi Charkha.After PMR GCA LVV diagnosis I also managed to get off Actemra /Tocilizumab weekly injections with a pred reduction routine and are off everything now.

My pred reduction program is in my profile.

Hope this works well for you as well.

From Scotland.

[Charkha in reply to Chrisellie]

Thank you so much for this information. It has been very helpful to look at your tapering schedule and also to know of your experience with Actrema. I was also interested to read about the rash you had. I have begun to get those blood spots on my skin and was assuming it was the prednisone but maybe it is an effect of the arteritis. I am very hopeful that the Actrema will help!

[Sharitone]

Hi Charkha, I was also told to reduce pred at twice the previous speed when I started Actemra injections (1mg every 2 weeks instead of every month). But by then I was at a much lower dose of pred than you - 14mg.I guess if your rheumy has given the ok to either dose, then you could do 37.5mg for a few days, then proceed to 35mg if it goes well?

Btw, don't worry too much if you feel weird a little while after the first injection. I did, but it only happened the first 2 times. Still seems to make me extra tired for the rest of the day, though. Good luck!

[HappyDiamonds in reply to Sharitone]

Reassuring to read that you also feel extra tired after each injection. I changed the day of my injection, although I do it at night before bed, so that I was at my most tired on a day I don't do much. Its always good to know we are not imagining things 😀

[Charkha in reply to Sharitone]

Thank you for sharing this. It is very helpful to hear from people who have experienced this and also to get the “heads up” on feeling extra tired and so on after the first couple of injections. I am hopeful that all will go well! Thanks for the good wishes.

[HappyDiamonds]

I have Actemra for GCA and tapering 1mg each month until I get to 5mg when I will be advised what to reduce from then on. I suspect if will be 0.5mg each month. So not a particularly quick taper. Just wanted to wish you well with it and hope its good for you so that you can improve mobility.

[Charkha in reply to HappyDiamonds]

Thank you for sharing your tapering schedule. It is helpful to hear of other people’s experience as I go into this for the first time. Thank you also for your good wishes! I am very hopeful!

[nallufl24]

I can only speak from my own experience. I tapered by 5 mg every 2 weeks from 35 to 10. Then i reduced by 2 1/2 til 5 mg. I was supposed to keep going but at 4 I had a constant headache so I went back to 5. I have been fine on 5 and have stayed there for the past 3 weeks

[Charkha in reply to nallufl24]

Thanks for this information. Am glad to hear that you are staying fine at the 5 mg dose and hope you will eventually be able to keep going lower. All the best.

[Charkha]

Thanks so much for this helpful information. The rheumatologist seems to know a lot about GCA so I am hopeful that I wont have some of the problems with the rate of taper that some people on this forum have had! It is very good to know about other people”s successful tapering and the points at which problems might appear. I am hopeful that Actrema will help me to get off this high dose prednisone quicker than I would have without it. Will let you know!

[PastelsinArt]

Hi Charkha, the Actemra will help with tapering your Pred, however when I started on it I was warned that it would be at least 4 weeks and possibly up to 12 weeks before I was aware of it's influence, which did prove to be the case. With biologics they take a while to build up in your system. Good luck with it. I'm glad you have a new consultant who seems to be on the ball

[Charkha in reply to PastelsinArt]

Thanks for letting me know this. It will certainly help me to know what is going on and what I might expect as I start all this. All the effects of the prednisone have been surprisingly more extreme than I expected at the outset which has made them more challenging I think! So I am definitely hoping the Actrema is going to help me get off prednisone more quickly!!

[Charkha]

Having lived with MS for over half my life now (hard to believe!) I certainly agree there is no such thing as a pain free life! And it would be nice to have just one major problem! But as long as we can get to where we can live well with the problems, that’s what counts doesn’t it? Over the years I have accommodated to the MS and I see how so many of you are doing the same in spite of the problems with GCA and PMR so it inspires me to believe I can do it too! I am encouraged that you managed to get off prednisone after all those years and fingers crossed that I can too. The main thing for now is to hope I can taper down more rapidly and some of the side effects of the high dose prednisone will begin to go away. In any case .... on we go!!!! Thanks for the encouragement.