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@dadcue

Having multiple conditions isn't ideal under any circumstance. When Actemra worked so well for PMR, I was able to taper to zero prednisone for the first time in 12 years.

Within a couple of weeks, of being off prednisone, I had a massive flare of uveitis. My long time ophthalmologist of 30 years didn't have the heart to start prednisone again. He just sat there without saying anything. I suggested 60 mg of prednisone and my ophthalmologist said it sounded about right but I needed to see a uveitis specialist.

The uveitis specialist wanted me on Humira and said that Actemra wasn't optimal treatment for uveitis. The uveitis specialist consulted my rheumatologist who agreed that the eye inflammation needed to be controlled. My rheumatologist conceded that Actemra wasn't likely to add anything to 60 mg of prednisone so he stopped Actemra. The uveitis specialist started me on Humira.

Humira might have worked for uveitis but my uveitis has always been "prednisone responsive" so I'm not sure that Humira helped that much. The uveitis specialist insisted I stay on Humira to prevent uveitis from happening again.

As I tapered my prednisone dose back to 15 mg, I started feeling pain again. I informed my rheumatologist about the pain. My rheumatologist said that I needed to give Humira a chance to work. He said it would take at least 3 months to know if Humira was going to work from a rheumatology perspective. I stayed on Humira for 4 months and the pain only got worse. I couldn't go any lower than 15 mg of prednisone.

I went back to my rheumatologist and we had a heart to heart talk about multiple autoimmune conditions. My rheumatologist said it would be impossible to adequately treat everything that was going on. He asked me which biologic I wanted because I couldn't take both of them. I chose Actemra.

The uveitis specialist wasn't pleased and said it was only a matter of time before I had another flare of uveitis if I didn't take Humira.. I said if uveitis happened again then I would take 60 mg of prednisone again if that was needed.

When Actemra was restarted for the second time, I was able to taper off prednisone again. From 15 mg to zero in 2 months after restarting Actemra.

The first time I was on Actemra, It took me about 9 months to taper off prednisone. An endocrinologist told me when it might be safe to discontinue prednisone the first time because of adrenal insufficiency.

My rheumatologis said I should follow the endocrinologist's instructions the second time too. The endocrinoligist offered her advise. She said miraculously, my cortisol level was still "adequate" so I could go ahead and stop prednisone the second time. I went from 60 mg of prednisone to zero in 6 months the second time. My endocrinologist never wants me to take prednisone again and says prednisone causes too many endocrine problems.

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Replies to "Having multiple conditions isn't ideal under any circumstance. When Actemra worked so well for PMR, I..."

That's really brave of you to advocate for yourself and what was important to you, even if it wasn't necessarily what one provider or the other was leaning toward. It really is hard. I hope that your remission from both lasts and either way you won't be in a position where you need to consider prednisone again!