Taper

[Blackcatlover]

What is the dead slow and stop method. I am new to this site. I have had P M R for three years with four flares. Now on 4mg of Actemra and wonder how I taper. My numbers have been good for four months now. I am so impressed with your knowledge as well as your ability to communicate. Any help would be appreciated.

[HeronNS]

healthunlocked.com/pmrgcauk...

[Blearyeyed]

Yep , it's the link Heron gave you , and the programme should still work the same way while on Actemra , but the Actemra itself , or another type of Steroid Sparer , should make the Tapering and withdrawal symptoms from Steroids easier on your system and reduce the possibility of having a Reactivation of your PMR or GCA symptoms.

Good luck

[Blackcatlover in reply to Blearyeyed]

Thanks so much, this really helps.

[Blackcatlover in reply to Blearyeyed]

Thank you. Until Actemra, I would flare as soon as I dropped below 12.5mg of Prednisone.

[Blearyeyed in reply to Blackcatlover]

Glad to see that it's helping you , I appreciate seeing positive experiences with Actemra at the moment as I'm hoping to have it approved myself .

[PMRpro Ambassador]

At this stage you are waiting for your adrenal function to return - when on Actemra that will be your limiting factor with the pred rather than any return of PMR/GCA symptoms although even Actemra is not entirely perfect and about half of patients have to stay on a low dose of pred.

But DSNS will help the adrenal problem too without you feeling as unwell as you might do otherwise.

[Blackcatlover in reply to PMRpro]

Had no idea that my adrenal glands were part of the equation. Have a lot to learn. You are all such great teachers. Thank you .

[Theziggy]

There are a lot of taper plans here - steroidtaper.azurewebsites....

[Blackcatlover in reply to Theziggy]

Thanks!

[Chrisellie]

Hi Blackcatlover

I have so far been successful on Actemra /Tocilizumab

My reduction was controlled by my rheumy and my symtoms.

You can check the reduction in my lengthy profile.

Hope it works for you.

[Blackcatlover in reply to Chrisellie]

How do I get to your profile. Would love to read it. I have so much to learn. Thanks.

[Chrisellie]

Hi Blackcatlover

If you touch on the picture in the circle it will bring up the information you are looking for.

It is next to my reply ( you have cherries in yours). Let me know if you manage ok.

[Blackcatlover in reply to Chrisellie]

Thanks Chrisellie. Just checked your wonderful profile. Lots of great info there.

[Blackcatlover]

Thanks. So much to learn.