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Titration steroids using Tyenne but now at a stuck point
After 21 months of just using steroids, I was stuck at 10 mg until I started getting Tyenne infusions in July of last year. I was able to drop to 2.5 mg by the beginning of this year rather smoothly. But I've been stuck ever since and am once again having trouble sleeping. My rheumy wants me to go back up to 4mg and says that I "may" need to stay at that dose forever. (Four mg was the last place I was pain free). I've gone back up to 3 but it isn't helping.
I've resisted because of what I have read about our adrenal glands slow "wake up" when you get this low. I want to tough it out if that's what is going on, but don't know how to tell if that's what is going on.
I have an appt with an endocrinologist in a few weeks but the rheumy says she probably won't want to run tests since I am still on steroids. I know I can't go any lower right now - it would be counter-productive.
I'm so tempted to increase the dosage to make my life more bearable. I'd welcome any advice!!
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Tocilizumab (Tyenne/Actemra) doesn't work completely for everyone. People have different amounts of the inflammatory substances that cause PMR and GCA. Tocilizumab blocks IL-6, which is the one of the main sources of inflammation. Actemra has worked very well for me. I have been off of prednisone for 6 months. But according to Google, Tocilizumab only works completely for 50 percent of people. It sounds like you are part of the other 50 percent, and that's why you need to keep taking prednisone. But I wouldn't think that means you have to keep taking prednisone forever. Here is a quote from Google AI about PMR:
"for many people, Polymyalgia Rheumatica (PMR) goes into remission and symptoms go away within 1 to 3 years, with roughly half of individuals able to stop treatment within 2 years. While 2 years is a common timeline, the duration varies for everyone, and it is not uncommon for it to last longer, sometimes requiring treatment for up to 5 years. "
It sounds like you need to keep taking 4 mg of prednisone for the foreseeable future. Hopefully your PMR will burn out at some point. My rheumatologist has told me that I am half way through a 3 year plan of using Actemra to treat GCA (at a minimum).
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3 ReactionsI second that info. I “seem to” be one of the 2 yr ones. 🤞
My success has been the Kevzara biologic. And I have read it has a good rate of success.
Patience is a must with PMR, and none of us are happy with that.
Good luck
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3 Reactions@jeff97 Are you having any side effects from the Actemra?
@tweetypie13 are you off prednisone completely? Do you have any side effects from Kevzara?
@retiredphil I had some very minor fatigue after the first few injections, but that went away and I haven't had any other side effects.
@retiredphil
Approximately….Started Kevzara 3/30/2025, prednisone was at 8, tapered off prednisone by 7/15 2025. No PMR pain at all.
Was and am on no other drugs. No side effects. Did have a wbc drop in October 2025, reduced dosage to every 3 wks, again no side effects, blood work all good.
It will be 11 months 3/4/2026 and hoping Dr takes me off.
It takes up to 3 months to be effective!
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1 Reaction@jeff97 Kevzara or Actemra?
@retiredphil Kevzara is approved to treat PMR, and Actemra is approved for GCA. They both block IL-6, which is one of the main sources of inflammation. There are a lot of people on this forum who have experience with Kevzara, including @tweetypie13.
I am not taking a biologic. I've been taking prednisone for seven years. The last several months I have stayed at 3mg. I saw my rheumatologist last week and he thinks my adrenals should be working. I was told I could try alternating 3mg/2mg ( he does not believe in pill splitting). I started alternating 3mg/2.5mg. I'm feeling ok already at 2.5mg so next week I'm going to start alternating 2.5mg/2mg. We are not testing cortisol. I'll go back to 3mg if neeeded. In these last 7 years I have been told a few times I may need to stay on a low dose. I have not taken any other meds for pmr other than prednisone and Tylenol. Even Tylenol has elevated my AST/ALT.
I'm feeling like the pmr has 'burned out'. But maybe I'm destined to be on a forever low dose of prednisone. Time will tell.
@pmrsuzie
"I saw my rheumatologist last week and he thinks my adrenals should be working."
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Saying your adrenals "should work" is entirely different than saying your adrenals "will work."
I was on 3 mg for a long time while I saw an endocrinologist because my cortisol level was too low to safely discontinue prednisone. When my cortisol level was adequate---my endocrinologist said I could "probably" discontinue prednisone. However, my endocrinologist "didn't know" and "couldn't predict" what would happen if and when I decided to stop taking prednisone.
The only thing that seemed "somewhat certain" was that Actemra controlled PMR "reasonably well." When I stopped taking Prednisone the first time ...something completely unexpected happened. About two weeks after I stopped Prednisone ... I needed 60 mg of prednisone again because of a flare of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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You won't know what will happen after prednisone is stopped. Hopefully it won't be an adrenal crisis. My flare of uveitis responded quickly to 60 mg of prednisone and I tapered off Prednisone again.
Everything about PMR and being treated with Prednisone is trial and error. I eventually got off prednisone a few months after the flare of uveitis but not until a different biologic was tried. The other biologic (Humira) didn't seem to work as well for PMR as Actemra did.
My rheumatologist let me decide what was best for me and staying on Prednisone was one of the options. I decided to give Actemra another chance because it got me off Prednisone for the first time in more than 12 years.
All I know is that Actemra didn't suppress my adrenal function which allowed me to taper off prednisone. Some people say that Actemra doesn't do anything to help secondary adrenal insufficiency. However, I would say it is what Actemra doesn't do that helped my adrenals to recover. Actemra didn't suppress my adrenal function all the while that PMR was controlled. Now I have been off Prednisone for more than 5 years.