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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Durham, NC

Has anyone experienced a difficult time coming off prednisone? If so we're you ever successful in ending prednisone and what worked for you?

I've been on prednisone since 2010, every time I get under 5mg I flare up again.

April 6, 2016
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A MyLupusTeam Member

Don't understimate predizone I've gone from 60mg a day to 5 mg a day from 2005. I have been told I will never be over when I'm really unwelll I double its the amount just listen to dr advice it's not great for you but it's the lesser of two evils! X

September 24, 2016
A MyLupusTeam Member

After reading all these comments I am shocked to hear so many people are still so depended on prednisone. most doctors avoid such a long period of it because this drug is so bad. I would say do some research. Methotrexate, Benlysta, Remicade these are just a few of other drugs out there to try. I'm not a doctor but I do know the best doctor out there is your own body, listen to what it's saying to you.

April 16, 2016
A MyLupusTeam Member

Benlysta is like every other drug...it's different for everyone. It has given me my life back! I have few side effects and more good days than bad.

April 8, 2016
A MyLupusTeam Member

@A MyLupusTeam Member: When I heard about Benlysta coming out and read about it in the Lupus Magazine, I questioned the people that did clinical trials on it as to why would they release the drug if it does not benefit everybody. It is not beneficial to African Americans because enough studies has not been done for us "yet" and not enough participation and the side effects are horrible. Wanted to share this http://www.benlysta.com/risks-side-effects/

April 8, 2016
A MyLupusTeam Member

I always had tapered the tapered dose. What really help relieve me is that I started looking for foods that cause inflammation and eliminated them. Then I would reintroduce them back and sure enough, I could feel my hands swelling.

April 7, 2016

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