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PMR: Are there treatment alternatives to Prednisone?
Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?
I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.
I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.
These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.
If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"
Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.
As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?
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From what I've read about Actemra, it is a monoclonal antibody against IL6 . I don't know if it encourages your body to stop making so much. There might be other cytokines in play also that are not being adressed. It seems that the pred shuts down a lot of our responses and that is why it works. Of course, all of it lowers our ability to fight off infection. Is it a complicated balancing act? Yes. A lot of drugs we take are handle differently in the body by each of us, so another complication. I can't think of anything more challenging that this condition for treatment and living with. And I have had some doozies. I think PMR is my biggest challenge.
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2 ReactionsMy GP got mine ordered at the compound pharmacy right away. My rheumatologist refused. I think you can also go online and find real Docs who will prescribe it for you.
Best of luck to you. If you really find a pull toward LDN - find it. Or I will help you find it. I’ll tell you if it works. 🤗
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2 ReactionsI don't think Actemra works "against" IL-6. From what I have read, it binds with the receptors of IL-6. These IL-6 receptors (IL-6R) are everywhere in the body. When the cytokine IL-6 binds to these receptors it causes a pro-inflammatory response. This triggers a cascade of immune related responses throughout the body which in turn causes unregulated "systemic inflammation."
Inflammation isn't inherently bad so long as it is regulated. One of the primary functions of cortisol is to "regulate" inflammation. When we take prednisone it is in an attempt to help the immune system regulate inflammation when the immune system goes haywire for some reason. The extra cortisol we take in the form of prednisone decreases the amount of inflammation to a more manageable level.
When Actemra binds to IL-6 receptors, the cytokine IL-6 has nowhere to go except that it stays in the bloodstream and IL-6 blood levels skyrocket. The body then down regulates the amount of the cytokine IL-6 in the bloodstream. Somehow IL-6 levels return to normal levels. It isn't clear to me why this happens except that the body likes to be in a state of equilibrium.
This is all from an interesting hypothesis that took me a while to fully understand. It is called the "bathtub theory" for the mechanism of action of Actemra for RA.
It is all a theory so take it for what it is worth. The diagram in the link below shows a red Y-shaped thing binding to an IL-6 receptor. It took me forever to figure out what that was.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory-Notes-The-mechanism-of_fig2_221967570It is as clear as mud.
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4 ReactionsGood GP kathyjb, I’ll wait to hear how you get on with it, meanwhile my local pharmacy delivered the nefopam, I started it today and can say it has taken the edge off my pain but better than that, it has calmed my mind, I’ve stopped worrying if the pain will ever go and I think sleep is going to be easier with it. Thanks so much for your help, good luck with the LDN, I’m sure between us all we will beat this pain.
I am 3 years into pmr and on prednisone 6 mg. Cannot seem to get off
Thank you for posting this. I am going to try to find out more about these people. I had just assumed, since they were antibodie that IL 6 was their target and they nulified them. Makes sense it would be more complex than that.
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2 ReactionsSince I started taking Placquenil 200 mg twice a day, I have been able to avoid flare ups and I’m taking only 5 mg of prednisone a day for past 27 years. I got PMR when I was 47.. I went un- properly diagnosed and I was treated with NSAID’s for 8 months with poor results. Whenever I try to cut back on Placquenil or prednisone, I have a flare up.
Don’t worry about it. Your body needs it to stay healthy. If you start having flares, ask your doctor to put you on Plaquenil 200 mg
"Because biologics are created using living cells, they can trigger an unintended immune response in which the body forms anti-drug antibodies that actually "fight" the drug. Almost all biologic medications can lead to the development of anti-drug antibodies, though the risk is different for each individual drug."
https://www.verywellhealth.com/antibodies-to-biologics-4846279#:~:text=Because%20biologics%20are%20created%20using,different%20for%20each%20individual%20drug.The immune system is complex and not well understood. The immune system is like a new frontier in medicine.
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1 ReactionTell me what nefopam is, please!