Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
My rheumatologist says he considers Actemra and Kavzara very similar and expects very similar results if they are used for treatment. Both disrupt the IL-6 immune pathway.
I am using Acterma to taper off Prednisone, and so far have tapered from 60 mg/day to 20 mg/day without relapse over a period of about 5 weeks.
Actemra is not officially FDA approved for PMR, but has been approved for GCA. Kevzara had been approved for PMR.
By the way, both of the corporate makers of these drugs have subsidy programs that can make them virtually free if you have commercial medical insurance.
-
Like -
Helpful -
Hug
5 ReactionsGreat information. Thank you!
-
Like -
Helpful -
Hug
1 ReactionI'm not one to nitpick but I don't think the mechanism of action of Actemra and Kevzara disrupts the IL-6 immune pathway. That inflammation pathway is already out of control. The IL-6 inflammation pathway is vital for the immune system to function appropriately. Inflammation is "protective" as long as it is regulated by the body.
I love to generate discussions because I greatly appreciate the opinions of other people. I have posted the "bathtub theory" before about how Actemra works. I think Actemra "resets" IL-6 levels. This in turn down regulates runaway inflammation thereby allowing systemic inflammation to return to normal.
Remission is the state when inflammation isn't running wild and is regulated.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory_fig2_221967570I don't think anyone knows exactly how these biologics work. Immune treatments are very new but have shown great potential in the treatment of many diseases.
I'm just grateful that Actemra helps me and others. However, it might not work for everyone. My only regret so far is why I couldn't have tried Actemra sooner. I can't dwell on my past and I can't change that. I just wonder if some things could have been avoided.
It is possible for Actemra to stop working but that seems to be the case with all biologics. Who would have thought that the body can form anti-drug antibodies? When this happens, a biologic might not work as well or stop working altogether. That would be another topic for discussion.
The immune system is very complex.
-
Like -
Helpful -
Hug
3 ReactionsIs is okay to have a glass or two of wine nightly with dinner while taking prednisone?
-
Like -
Helpful -
Hug
1 ReactionI think your rheumatologist is on target. I’ll-6 is key
player in PMR and cytokine storm.
I paid to have mine drawn as a non-coverage expense at a reference lab and it was elevated while recovering.
Now I am a believer in the anti-inflammatory diet pattern.
-
Like -
Helpful -
Hug
2 ReactionsI had not had any wine since my diagnosis of GCA... when my daughter-in-law was with me helping out, I made sure there were a few bottles in the fridge; I know she enjoys it.
One evening she poured me half a wine glass; I savored every sip and surprise!!! Nothing happened; I'm still here, and no side effects. I'm not afraid to have a bit now and then.
It may be wise to ask the doctor because of other meds where it would be contraindicated. Worth a try.💞
-
Like -
Helpful -
Hug
2 ReactionsIf you have the resources, I encourage people to look into hbot (hyperbaric oxygen therapy) as well as pemf treatment (pulsed electro magnetic frequency) as complimentary treatments that help mitigate inflammation.
-
Like -
Helpful -
Hug
2 ReactionsI cannot give a recommendation, but I know you can purchase TENS units on Amazon. Although I know a few people who have used these with a measure of relief, I have not.💞
-
Like -
Helpful -
Hug
1 ReactionI have to agree that IL-6 is key although I have never had my IL-6 level checked. My rheumatologist thinks checking my IL-6 level isn't necessary since my symptoms resolved on Actemra which is an IL-6 receptor blocker.
My CRP levels and ESR are still checked regularly. It was a good thing they were checked when my Actemra dose was being reduced. My CRP level ticked up a bit but I can't say my symptoms were any worse.
I thought CRP and ESR levels were useless. Even when I wasn't on Actemra, I can't say my CRP and ESR levels were all that useful because they fluctuated so much. They aren't specific to what is causing the inflammation.
"According to the research, clinical trials of IV tocilizumab demonstrated that maintaining serum trough tocilizumab concentrations ≥1 µg/mL resulted in a normalized CRP concentration (< 1 mg/dL). This suggests that CRP is a useful biomarker for tocilizumab levels high enough to inhibit IL-6 signaling."
My rheumatolologist says CRP is still useful to help him establish the optimal dose of Actemra for me. I don't understand any of this but I'm glad my rheumatolgist does.
-
Like -
Helpful -
Hug
1 ReactionI just wanted to comment briefly. We have a limited number of guides in investigating an autoimmune disease. Our CRP/ESR levels are an excellent measure of inflammation, although it is essential to remember a patient can have an AI with normal CRP/ESR levels.
My rheumatologist also checks my liver enzymes since I have been on the weekly injection pen for three years...with a short break because of cellulitis.
I have had no experience with IV Actemra. I'm sure I'll be on the weekly pen for some time. IF I ever went bi-weekly, once again, my CRP/ESR would be useful.
Somehow, I don't see that in my foggy crystal ball~!💞
-
Like -
Helpful -
Hug
1 Reaction