← Return to Smallest amount of prednisone for adrenal glands to work again?

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I think I understand what you are saying. If I don't ... keep posting so I can understand better.

I actually thought I would be fine taking Prednisone for the rest of my life when Actemra was tried. I didn't think Actemra would work and I only tried it because I made a semi commitment to my rheumatologist before he sought the authorization to treat me with Actemra.

I went into Actemra thinking I would get the "inevitable flare" over and done so I could take more Prednisone again. I couldn't function on anything less than 7 mg and 10 mg was better. If you can manage on 5 mg ... that is better than I could do.

Now ... I'm just very grateful to be off Prednisone ... that's all. If Actemra didn't work for me, I would still be taking Prednisone. Actually ... Actemra doesn't work that well for all my autoimmune conditions.

When I was on Actemra and tapered off Prednisone the first time, I had a massive flare of panuveitis shortly after tapering off prednisone.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My ophthalmologist was rather adamant that I be on Humira instead of Actemra to prevent recurring flares of uveitis. I went from zero prednisone to 60 mg again in one fell swoop. Humira was started and Actemra was stopped. When I tried to taper off Prednisone again ... I only managed to get back to 15 mg. My flare of uveitis was controlled but PMR wasn't.

My rheumatologist acknowledged that it would be impossible to adequately treat all of my autoimmune conditions with a single biologic. I could only be on one biologic so I needed to choose between Actemra or Humira. My only other option was to stay on prednisone. It was solely my decision to go back on Actemra because I had too much pain on Humira and I couldn't taper off Prednisone again. I only chose Actemra with the understanding that I might need Prednisone again in the future.

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Replies to "I think I understand what you are saying. If I don't ... keep posting so I..."

@dadcue I believe what linda7 is trying to tell you is your experience is your experience and does not apply to everyone. None of us are medical professionals, we are the victims of this horrid PMR and everyone's journey is a little different from the next person. Simply explaining what you understand is enough. We need to all respect that we each struggle to decide what is right for us.
I have recently been diagnosed with Giant Cell vasculitis, asymptomatic, all very rare and I suspect that there is not another member of this Group that has walked the road I am on. They are still trying to evaluate where I am on the Giant Cell journey while I live with the threat of a possible aortic aneurism. It is scary, both my short-term future and my long-term future are unknown. I am determined to play the hand I was delt with maturity and optimism. Plus, I have a three-week vacation planned to start the first of Feb. We need to find out if I should cancel. We never know what someone else is dealing with.