Tapering while on Actemra

[potterylady]

Hello, one year into GCA PMR journey. Been on Actemra and Pred one year. Tapered too fast in March (also very stressful event happened) then flared horribly. Back up to 35mg. Now down to 30mg and tapering to 25 using DSDL method. I was going to taper to 27.5mg first, but I'm going to try 25mg slowly.

What is a good taper plan while on Actemra? Can I go faster? What would you recommend as a drop every month or every 6 weeks? Does DSDL apply while on Actemra? It seems like lots of people go down faster with Actemra.

Thank you. You all are my lifeline

[PMRpro Ambassador]

The Actemra deals with all the inflammation caused by the inflammatory substance IL-6 so the need for pred is going to be considerably less. Generally, if you start pred at the same time as Actemra, the clinical trials suggest it is usual to be able to taper in a year. Actemra doesn't take effect instantly - despite the fact that some doctors think it does. But you SHOULD be able to go faster.

It is surprising that you flared very badly while on Actemra - which suggests a lot of the other causes of inflammation are involved in your GCA. Usually that is managed by about 10mg pred.

You will still experience the problems of changing the dose of pred and some people find that harder than others. But you should be able to taper 5mg at a time at present, especially with the DSNS approach even on a short cycle over 3 or 4 weeks. Grammy80 has had to taper very slowly even with Actemra but she had had GCA for a long time before starting it.

Everyone is different - but bear in mind that some causes of the GCA inflammation do NOT respond to Actemra and you may not get to zero pred. I hope your doctor is aware of that,

[potterylady in reply to PMRpro]

Thank you. I’d love to do 5mg over 3-4 weeks. I’m going to try it. I really appreciate your input.

[PMR2011]

Hi Potterylady, I tapered every 2-3 weeks and 5mg at a time until I got to 10mg. Then tapered 2.5 mg to get to 7mg. Then took it slower dropping 0.5 to 1mg following DSNS waiting for adrenals to wake up. It seemed to work well for me, as I was able to get off Pred completely.

[potterylady in reply to PMR2011]

That's amazing. Do you also have GCA? Are you still on Actemra? How long did you take Actemra?

[PMR2011 in reply to potterylady]

I have both PMR and GCA. Have been on Actemra for nearly 4 years. I did stop it once and unfortunately symptoms returned and markers rose. So with a 2 week Pred bridge I went back on it. Am currently every 3 weeks and may attempt to stop it again this fall.

[potterylady in reply to PMR2011]

Wow, 4 years.... So good you got down to 1mg or less with Actemra. And it's great you only take it every 3 weeks now---I'd love to be taking that small an amount of these medications. Can I ask, how long have you had PMR and how long have you had GCA? Did they come on at the same time? Mine seemed to. I hope you are able to totally stop the meds and will be fully well.

[PMR2011 in reply to potterylady]

Thanks for the warm sentiments. I was diagnosed with PMR in 2011 then 6 years later when I was around 2-4 mg of Pred developed GCA. So I’m on the far end of the curve with length of illness. Am hoping too that I can stop Actemra but may end up a “lifer” requiring a small maintenance dose to keep it at bay. 🤞ut is lovely being off Pred and Actemra has created No difficulties. Am also very lucky in US and can be on it this long.

[potterylady in reply to PMR2011]

I hope you're not a "lifer". But we never know, do we? I'm also in the US. Thank you so much for your input. It really helps me to think through what I should do.

[Jim-CJ]

My wife (GCA) has been on Actemra for almost 6 years. Tapering went well using the Dead Slow method and weekly Actemra shots. Ended at 3.5 mg Prednisone and every other week Actemra shots. Holding there, but just waiting to see her Endo Dr to go further. In general, Actemra worked great.

Jim & CJ

[potterylady]

Wow, good info to know, thank you. When did she go to every other week on Actemra? I'd like to do that too, but after I get lower on the Pred. Great that she's down to 3.5mg.