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@redboat

Hi @dadcue! You asked "Did anyone ever tell you that your taper was too fast?" The answer is yes. There is another website out of the UK, and when I posted the six month tapering schedule my rheumatologist had recommended, the self-proclaimed experts there were extremely skeptical to the point of rudely ridiculing my posting. They believed the schedule was ridiculously fast.

Yet, I trusted my rheumatologist, and it turned out that I was able to taper over 6 months with no flares. If I had flares, my rheumatologist recommended stepping back to the last level of Prednisone dosage before the flares occurred. But that never happened.

You also asked "Did you ever feel any symptoms that you would attribute to adrenal insufficiency?"

The only thing I noticed about my adrenals was that after my initial Prednisone dosage was started at 20 mg/day shortly after my diagnosis, my adrenal glands then slowly stopped making cortisol over a period of several weeks. Unfortunately, at that point, the 20 mg dosage of Prednisone was inadequate to alleviate my inflammation. I ended up having to go to the ER due to an extreme inflammation event - specifically double vision due to swelling in the structures behind my eyes. The ER doctors then raised my Prednisone dosage to 60 mg/day. That was enough to finally stop my inflammation. This was over 6 weeks after my initial PMR/GCA attack, and there was a lot of pain until this happened. However, 60 mg/day of Prednisone had some serious side effects, so I was very happy to have Actemra introduced about a month later and to start tapering off Prednisone.

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Replies to "Hi @dadcue! You asked "Did anyone ever tell you that your taper was too fast?" The..."

I know the website you are referring to. I liked the forum itself with people who were sharing their experiences. Everyone seemed to say the "experts" would be able to answer any questions I had.

There were just a couple of people who claimed to be "entitled to know" things about PMR/GCA when everything I was reading said more research was needed. I pointed out some things and "respectfully disagreed" what one of the experts said. The retort was that I was being disrespectful for disagreeing with them. I was mostly reporting what my personal experience was when I started Actemra more than 5 years ago. The experts weren't very supportive and were critical of my rheumatoolgist.

I wanted to get information about Actemra back in 2019 when I didn't know anything about it. There wasn't much experience with Actemra for PMR in the UK but there were some people elsewhere in Europe who were being treated with Actemra I tried to ignore the experts and tried to communicate with people who had some experience with Actemra. The experts would interrupt the thread with their opinions. I haven't been on that forum for a long time. I ended up being banned. My experience with Actemra wasn't pertinent was what I was told. I think it just disrupted the narrative of the experts.