Taper: What is the dead slow and stop method. I am... - PMRGCAuk

PMRGCAuk

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Taper

Blackcatlover profile image
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.

15 Replies

healthunlocked.com/pmrgcauk...

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

Thanks so much, this really helps.

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

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 profile image
PMRproAmbassador

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 profile image
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 .

Hidden profile image
Hidden in reply to Blackcatlover

If nothing else, Actemra hopefully will provide some insight into what is causing what. When taking pred, the adrenals are a huge part of the equation.

I think when taking Actemra, the whole equation changes. Yes, it still takes time to decrease the pred.

Blackcatlover profile image
Blackcatlover in reply to Hidden

Thanks. So much to learn.

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

Thanks!

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.

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

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.

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

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