Trouble going below 3mg

I was told by my Rheumatologist, that once I got below 5 mg, to stay there for 4-6 weeks. I’m now on 4mg and have been here 3 weeks. I will wait another 2 weeks and try the alternating of 3mg one day and 4 the next, for 10 days. This is the only way I was able to go below 5. Hopefully we can both get off this soon! I’ve been on steroids for over 3 years, and was never able to get below 5. I’m very hopeful! Good luck

"I hope the fact I could do that much work and recover ok indicates my adrenals are functioning."
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I don't know what it means but "recovery time after exercise" was what I noticed the most after I got off Prednisone. I worked with a physical therapist initially. We would do sets of 10 reps of different exercises. I started with one set but I had to rest between exercises. The whole session with the physical therapist was more rest than exercise. Afterwards I went home and I was wiped out for 24 hours. My improvement was gradual but with time I was doing 3 sets of 10 reps with almost no rest between exercises.

I exercise on my own now. I like aquacise the most. Yesterday I spent 2 hours in the pool and went home and mowed the grass for more than an hour before a short nap. I still get tired but not as easily.

My rheumatologist messaged me to just stay on 3mg til Aug appt. So, for now, I'll stay on 3mg, have my markers tested before the appt and hopefully try the taper schedule in that article.
Thanks to those who have commented on this topic.
suzanne

Does everybody taking a biologic or DMARD get to 0mg prednisone?
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No ... only about half of the patients on Actemra were able to get to 0 mg of prednisone. I was part of the lucky half ... I guess.

In the Giacta trial for GCA approximately 3 times more patients were able to achieve a "sustained remission" in 52 weeks compared to Prednisone alone. The cumulative dose of Prednisone needed for remission was much less and also statistically significant.
https://www.nejm.org/doi/full/10.1056/NEJMoa1613849

"No ... only about half of the patients on Actemra were able to get to 0 mg of prednisone. I was part of the lucky half ... I guess."

With all you've been through, you deserved that bit of luck.
Does that mean the unlucky patients were/are taking both prednisone and actemra? If you cannot get to 0mg prednisone you stop taking actemra? Must be interleukin 6 related?
I still do not personally know anyone who like me has pmr, in 7 years.

From 3 mg down, on the attached protocol, is the same as the Ded Slow Drop ("DSD") protocol. However the DSD differs once you drop to the lower dose for 7 days. Then you remain at the new lower dose for at least 3 weeks. As so many of us have reported, it's unsurprising to go 3 weeks at a new lower dose and then have some symptoms, if not a strong resurgence of symptoms, at around the 3 week mark.

I was unable to get below 5 without being miserable from symptoms. So I tried the DSD and am now symptom free at 3 mg. My rheumatologist's plan is to stay at 3 for min 3 or 4 weeks, then *if I choose* to drop very slowly - DSD using 1/2 mg increments. But he really doesn't mind if I remain at 3 mg for an extended period.

I may elect to just stay at 3.

Yes, I've been following similar to what's called the "dead slow" taper since 7mg, the point just above where I had my one and only flare last year. If it's done consistently it's not really slow at all. The original taper schedule I was given said to drop 1mg (under 10mg) every 4 - 8 weeks and the incremental taper I'm doing achieves it in 7-8 weeks, within the recommended reduction schedule range (Australia). The taper schedule given in the link on the original post is almost identical.

I begin the .5mg reduction to 3mg in a few days. My worry about staying at 3mg for too long is that it doesn't challenge the adrenal glands to go back into production, as 3mg is the amount people who have non-functioning adrenals take indefinitely. I'll take the reductions under 3mg carefully, but I do want to encourage my adrenals to function again.

"I still do not personally know anyone who like me has pmr, in 7 years."
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@pmrsuzie I really believe a multidisciplinary approach is needed for complicated autoimmune cases like yours.

I don't know what I would have done if Actemra didn't allow me to taper off prednisone. Part of the reason my rheumatologist wanted me to try Actemra was because he didn't feel that taking prednisone for the rest of my life was good for me.

I personally didn't think Actemra would work when I first started doing Actemra injections. The people who promoted the dead slow method of tapering were against Actemra even though they had no personal experience with Actemra. They emphasized the "serious side effects" from Actemra and downplayed the "manageable side effects" from prednisone. They actually questioned how knowledgeable my doctors were. They said doctors in the USA were breaking the rules for treating PMR patients with Actemra. These comments only came from one or two "self proclaimed PMR experts." They said I was being disrespectful when I disagreed with them about low dose Prednisone for the rest of my life.

I mentioned all the negative feedback about Actemra to my rheumatologist because I was almost ready to back out of my commitment to try Actemra. My rheumatologist couldn't guarantee Actemra would work but he felt it was my "best chance" of ever getting off prednisone. He said I wouldn't know if Actemra would work or not unless I tried it.

I decided to go ahead and try Actemra but I wasn't optimistic it would work. Part of the reason I tapered by 1 mg per week from 7 mg to 3 mg was to get the inevitable flare over with.

I was in a hurry to get off prednisone when I needed to stay on 3 mg for 6 months when my cortisol level was low, I did some trials with going back and forth between 3 mg and zero but I would quickly go back to 3 mg again. I was mostly compliant with what my doctors told me. I was their "test case" but they reinforced the idea that Actemra "should work."

Imagine how I felt after I got off prednisone the first time. I had a flare of uveitis and my ophthalmologist restarted 60 mg of prednisone while Actemra was stopped. Uveitis is mostly associated with spondyloarthritis and not PMR. My ophthalmologist said Actemra wasn't optimal treatment for uveitis..

My rheumatologist, ophthalmologist and endocrinologist all collaborated to decide what to do next.

After trying Humira for 3 months I was given some options. I was on Humira and 15 mg of Prednisone and that wasn't acceptable to me. Humira is a TNF inhibitor and it wasn't working for me. TNF inhibitors aren't recommended to treat PMR but they are commonly used for spondyloarthritis and uveitis.

I decided to go back on Actemra hoping to get completely off Prednisone again. After Actemra was restarted, I went from 15 mg to zero in about six weeks. I have to conclude my problem was with IL-6.

I also concluded that cortisol levels play a role in being unable to taper off Prednisone even though the PMR experts said my cortisol level had nothing to do with it. That was contrary to what my endocrinologist said about 3 mg. It was such a low dose of Prednisone there was no need to taper as long as my cortisol level remained at an adequate level.

I am not totally symptom free at 3mg. I'm having a little shoulder and hip pain in the morning but seems to go away when I move around. I can find other things to blame for achiness- humidity, lots of rain the last month or so and I've been doing a lot of weeding. My hands are stiff but I have OA and cppd. I am resolved to the fact that I am not going to get a LOT better. I am so hoping to not go above this 3 mg.

Yes, some people who take Actemra have to keep talking prednisone. Actemra inhibits IL-6, but there are other substances that cause the inflammation from PMR and GCA, such as IL-17. The person's mix of the inflammatory substances determines if they have to keep taking prednisone.