Actermra and Pred tapering.: I have just read Jim's... - PMRGCAuk

PMRGCAuk

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Actermra and Pred tapering.

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Hidden

I have just read Jim's post about his wife now on 5mg prednisone and reducing having had Actemra.

I am in a similar position having been diagnosed with large vessel GCA in November 2017 although with symptoms for at least 9 months prior to that. I too am down to 5mg prednisone ( I was on 100mg daily over November and December!) and have reduced so far with no ill effects or flares whatsoever to 5mg for the past month. My Rheumatologist has said he will have me off prednisone altogether by the end of the year after 7 monthly infusions of Actemra.

When I questioned this he told me that Actemra facilitates reducing pred but now I am wondering if I should taper at a slower level?

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I don’t feel able to advise because of Actemra being such an unknown quantity in the U.K. I am not clear on the impact of Actemra on the whole tapering process and how it makes you feel in combination with Pred. Whether there are different side effects that temper its efficacy?

you have done impressively well to get so low from such a high dose and without flares or ill effects. You are a poster person for it. How are you energy wise? Adrenal Function is a thing to consider. My hunch is that you will sail right on through. Good luck!

Hidden
Hidden in reply to SheffieldJane

Thank you Jane I hope you are right! Energy is good and always has been. I seem to be a bit of an anomaly. My only symptom is severe claudication pain in my arms with activity along with muscle wasting and some related depression now also a thing of the past. My brachial and auxiliary arteries are severely narrowed and in some cases occluded. Feel quite lucky when I read how badly others are affected.

SheffieldJane
SheffieldJane in reply to Hidden

Statistically, I guess we post when we feel bad. It’s refreshing to read your account. Take care!

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Hidden

WOW! You are a Poster Person for GCA, Prednisone, Actemra and tapering!!!!! I was on 80 mg in November and I'm at 30 now. I hope Jane is right and you sail right through.... best of luck.

Hidden
Hidden in reply to Hidden

Thank you so much. And you too!

PMRpro
PMRproAmbassador

It does facilitate tapering of pred in the context of the GCA - as you have seen. But when you get to this level your adrenal function has to click back in - and the Actemra will have no effect there at all. But he is allowing you another 5 months to get from 5mg pred to zero - which SHOULD be long enough. You will just have to try it and keep an eye out for adrenal problems.

Dirussell,

I also have GCA and PMR and I take Actemra. I am at 5mg of Prednisone and an Actemra shot every two weeks. I am not a medical expert but I am in no rush to get off the Prednisone. I taper very slowly and cautiously. GCA and PMR have a definite time factor involved so I am not in a rush to 0mg. Again, I am no expert but I hop this helps.

Enan

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Hidden in reply to enan-illuc

Thanks enan, yes it does! So good to have all this wisdom and kindness!

Hi dirussell,

My wife is on weekly injections of Actemra. She has GCA and on Prednisone for almost 4 years. She did not start Actemra until she finally got to 20mg of Prednisone. At 5mg you need to pause until your Adrenal gland starts to work. Then you can continue to taper. Her endo doc says monthly to zero, but could be longer.

Hope This Helps,

Jim & CJ

Hidden
Hidden in reply to Jim-CJ

Thank you so much Jim. Yes you are right about taking things slowly. I will talk to my Dr before I reduce further. Good luck to you too.

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