PMR: Are there treatment alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20, 2020

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mike | @dadcue | Mar 12, 2023

I don't think Actemra destroys the IL-6 receptor. The receptors are still functioning except the cytokine IL-6 has to compete with the Actemra molecule. To the extent that Actemra doesn't trigger a pro-inflammatory response like the cytokine IL-6 does, I would guess this would reign in the systemic inflammation. Pure speculation on my part.

From my personal experience with stopping Actemra --- my symptoms gradually returned within a couple of months. My rheumatologist said what I reported to him was consistent with what other patients have reported. I assume the IL-6 inflammatory pathway is still functioning after Actemra is stopped.

Does this answer your question?

I have read about cases where patients have a deficiency of IL-6 receptors. This seems to predispose them to immunodeficiency so they are infection prone.
https://rupress.org/jem/article/216/9/1986/120703/Loss-of-the-interleukin-6-receptor-causes
I haven't ever read anything that said Actemra can cause this.

If you are interested, the following link is understandable and talks about the evolution of IL-6 targeted treatments.
https://www.nature.com/articles/s41584-020-0419-z

haileywade | @haileywade | Mar 12, 2023

Thank you for giving me a good laugh. I've been on prednisone for over a year down to 7mg having pain most of the morning but I'm not willing to increase it. This has been a depressing and frustrating time of my life. I'm over 70 and hope I won't have to live the rest of my life with this awful disease.
My son went to university of Florida graduate school and decided to stay in Gainesville coming from beautiful So. Calif. I never understood it. I tribute it to my beautiful and wonderful daughter-in-law he met there. Ok I'll stop complaining but it feels so good.

artur | @artur | Mar 12, 2023

In reply to @kathyjb "Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone...." + (show)

Hi....I was presented with PMR in under 24 hours with horrendous pain from my neck down. From completely healthy, logging the day before to full blown PMR the next. Couldn't even dress myself or get out of bed without help. Like you I did not want steroids....until the pain was enough to make me consider them. After my first dose of 20mg of prednisone I felt like superman. The next day not so much and the next day the doctor upped my prednisone.
It is totally a learning curve that you teach yourself. I try to keep myself on the edge or the least prednisone possible. Problem is it is easy to flare from this edge and I probably end up taking more prednisone to beat the flare than if I had used a tad more every day. To each his own. I am rethinking my mindset on this. PMR drugs all have some serious POSSIBLE side affects.
Prednisone seems to be the first choice of drug for PMR. There must be a reason.
Remember, PMR is a little researched disease and you and I and many others like us have it. Not many people like their disease treatment whatever the disease. Your lifestyle will change, your activities will change, your body shape may change. You look perfectly normal on the outside but you are being tortured on the inside. Family have told me I was always so active, now, some days, I sleep all day. In the end it will be the lack of pain that will tell you how to live as normal a life as you can. The light at the end of the tunnel is many people go into remission from PMR.

kathyjb | @kathyjb | Mar 12, 2023

In reply to @sususi "Nefopam is a non-opioid painkiller, lm finding it more like an antidepressant, it does reduce my..." + (show)

I may know a Dr in Fort Wayne Indiana who will prescribe it for you to a compound pharmacy there and they will ship it. Tell me if you are interested. I may be able to connect you with them.

sususi | @sususi | Mar 13, 2023

kathyjb I’ve just found a private doctor here who can prescribe LDN. Thanks for your offer of help though kathy, you have a lovely generous heart ❤️.
Fort Wayne Indiana sounds fabulous, going to explore that far off place on Google, an armchair holiday.

suetex | @suetex | Mar 13, 2023

In reply to @kathyjb "A local compounding pharmacy got the order for LDN today. I’ll pick it up next week..." + (show)

What dose are you starting at? Will you go up from there? Please let us know how it goes.

suetex | @suetex | Mar 13, 2023

In reply to @dadcue "I don't think Actemra destroys the IL-6 receptor. The receptors are still functioning except the cytokine..." + (show)

I think you are right about the competition and therefore the body wouldn't react like the receptor had been removed. Likely, I am over-thinking this. Nevermind.
I think the number of receptors a person has for anything is very individual, and is part of the reason medicine is so "try it and see". We are all unique. Snowflakes, everyone.

kathyjb | @kathyjb | Mar 13, 2023

In reply to @suetex "What dose are you starting at? Will you go up from there? Please let us know..." + (show)

I haven’t yet picked it up. But I think they said it would begin at 1.5mg. I don’t know how quickly it goes up, but it will stop at 4.5mg

kathyjb | @kathyjb | Mar 23, 2023

In reply to @kathyjb "I haven’t yet picked it up. But I think they said it would begin at 1.5mg...." + (show)

I have taken 1.5 for four days now. Tomorrow I raise it to 3.0.
I’m staying at 3 for ten days. I’d I feel marked relief at 3.0, I’ll stay there longer before maxing at 4.5.