Flareups, Prednisone, Tapering

Thank you

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There is a lot of information and experiences available in this group. Become knowledgeable.
Generally, unless and until your inflammation tests are normal, your PMR is not in remission. Until it definitely is, do not be concerned with tapering. I had to increase from 20 initially to 30. It then took one month to get to remission based on testing. That was 11 months ago.
If you talk to two docs, you will probably get two opinions. Be careful you do not start chasing a bouncing ball of dosages and opinions. Slow and steady seems to work for most of us.
Once PMR is in remission, you will still have intermittent and various pain levels as you taper. Almost guaranteed. Unless your tests show it, the pain is most likely not PMR, and is something such as pre-existing osteoarthritis that has previously been adequately suppressed by your cortisol. Stick with a constant dose if possible until the next scheduled taper.
All this assumes your docs have ruled out other possible problems, like lupus and RA. All pain is not PMR pain.
This can be complex, and not necessarily vulnerable to a simple solution. Learn.
Best of luck. It is sometimes needed.

To Susanew, My Question to you is what dosage were you taking before going down to 1mg? I taper very gradually and yesterday after being on 2.5 for 5 days I had a flare up - the first in one year! I immediately went back to my previous dosage of 2.75 and today the flare up is gone. My Rheumatologist told me during my last visit that if I got a flare up to go back to the previous dosage. I will stay here for a week and trying going to 2.5 again. I have had PMR for a smigon over a year, and have gone from 20mg to my dosage now, by small increments every two weeks.

I was on steroids a little less time but I did exactly the same thing. At 4 months I went to 5mg. Stayed about a month Then went to 2.5. Then tried about about every 2 weeks at 2.5 to just stop. I couldnt. About the third try I stopped. So right at about 6 months I went from 2.5 to zero. It took about 3 months to feel completely normal.

In retrospect, I should have tried harder to taper off Prednisone sooner. I tried to taper off Prednisone quickly initially after PMR was diagnosed. I was accustomed to going from 60 mg to zero in a month or two for flares of reactive arthritis and uveitis. I knew it was possible to taper off relatively quickly. I also knew when I was in remission for the above disorders. It was hard to know when PMR was in remission.

I recall when my rheumatologist told me PMR was going to be a long term proposition. She said I would not be able to taper off as quickly as I was accustomed to. I don't know why PMR was different . My rheumatologist said I would be on Prednisone for at least a year and maybe two years. I don't think my rheumatologist thought it would be 12 years until I would be off Prednisone again.

When I was told the symptoms of adrenal insufficiency can mimic the conditions that prednisone was treating it all started to make sense to me. The person who had the adrenal crisis said it would be difficult to separate out what symptoms were adrenal insufficiency and what symptoms were caused by the autoimmune conditions we have. She was being treated for Mixed Connective Tissue Disease (MCTD). Those "overlap features" of various autoimmune conditions complicate everything.
https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147
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I had overlapping symptoms of several conditions. My belief is that we all have a combination adrenal insufficiency to some degree the longer we are on Prednisone in addition to our autoimmune conditions.

I'm amazed I was able to taper off Prednisone after being on Prednisone continuously for 12 years. I wonder how much my intermittent use of Prednisone during the 20 years before PMR was diagnosed compromised my adrenal function.

I go back and forth about whether or not Actemra helps the adrenals to recover. I have decided Actemra indirectly helps the adrenals because ...
#1 Actemra allowed me to lower my Prednisone dose to 3 mg or less
and
#2 Actemra doesn't suppress my adrenal function like Prednisone did.

Actemra worked well for the PMR part of my problem. Being able to stay on 3 mg of Prednisone or less for an extended period of time seemed to allow my cortisol level to improve.

You are a medical marvel. You also had the perseverance to stay with it. You are in a category by yourself. I hope you continue to enlighten the rest of us. Cheers.

Those are huge jumps - percentage wise. I expect to get to zero by way of 2.75, 2.50, 2.25 etc. I cut the 1mg pills into lots of sizes and judge from the different sizes how much to take.

Perseverance isn't the word that describes it. I took prednisone because I didn't know what else to do. I almost refused Actemra because someone told me prednisone was the "only option" for PMR. The same person said prednisone for the rest of my life would be better than Actemra because of the "quality of life" I would have on Prednisone. . I almost believed it because I didn't think the rest of my life would be very long. The same person advised people to increase their dose whenever they experienced pain contrary to what their doctors advised

The person who had the adrenal crisis was saying the exact opposite. She wanted me to decrease my Prednisone dose in order to preserve whatever adrenal function I had left. Sadly... the person who had the adrenal crisis said her quality of life was zilch. She didn't want me to have the same fate.

I only tried Actemra to get the "inevitable flare" over with! Whatever enlightenment I have came after I tapered off Prednisone. People who are able to taper off Prednisone without a biologic or another alternative are the medical marvels to me.

yes. I was taking dexamethasone. The jumps are real but I was taking 2mg of Dex which I equate to 10mg prednisone. Then dropped to 1mg or about 5mg and then dropped to .5mg dex. Its hard to get any smaller so I just went off. I had 2mg pills. cutting to 1/4's was difficult. My conversions are not correct either but its close. .75mg dex = 5mg prednisone.