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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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Why were your brother and brother-in-law treated with prednisone for so long? I thought prednisone was only used short term for the treatment for RA flares but not used anymore as a long term treatment for RA.
I think it is great that you were prescribed Kevzara so soon. I did reasonably well on prednisone. I took it willingly even though I acquired other medical conditions which were "prednisone related."
I don't regret taking prednisone for as long as I did. My only regret is that I wish Actemra was tried sooner.
To Wilmington Emperor.
I am still waiting to see if I have been approved for financial assistance for Kevzara. I am so encouraged to know that you had such good results. I’m curious if your 6 injections were over a three month period. Is the plan to stop the Kezvara or do you just reduce the number of injections over time to hopefully get off of that too? I remember you said you were taking 20 mg when you started Kevzara so it’s impressive that you were able to get to 0mg (Jan 9) with the help of Kevzara.
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1 ReactionHi harelover; so the Kevzara was over 12 weeks starting in October. My 7th injection will be next Tuesday, Jan 16. I am very fortunate that as a retired military I have a very manageable co pay for a 2 month supply(4 injector pens) that is delivered by FedX in a cold pack overnight. IO don't know what the next step is at this time. I think it depends on whether there is any negative reaction to no more prednisone. If Kevzara ends up being a maintenance drug over time, so be it. My doc has really been on top of the whole situation since I was diagnosed. He is my PCP and not a rheumatologist. So good luck and stay in touch.
John
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2 ReactionsGot it! Good luck with being Predisone- free. I hope that others with experience with Kevzara will post here as well since it’s so new for PMR treatment. Keep us informed.
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2 ReactionsThere are quite a few other discussions where member have shared their experience with Kevzara you might also find helpful. Here is a list of the different discussions using a search of Connect for Kevzara - https://connect.mayoclinic.org/search/discussions/.
@chris1466 I asked my rheumatologist about LDN and she just dismissed me 🤬 I'm going to try it, thank you for sharing this!
@mikeshell I am relating both to your 20 mg - immediate improvement and reducing dosage by 2.5 mg. --but in my case I am decreasing after only 7 days 20 to 17.5 to 15 to 12.5 to 10. I feel my tolerance for the hyped up state decreases so that at the beginning of the week I feel relief at the lowered dose and then by the end of the 7 days the stress & strain just sees to much to bear. I interpret that as having a tolerance for a dosage level @ 7 days. I do know that we have to decrease more gradually at the lower doses (below 7 mg is the word out there). I will watch to see if I can tolerate slowing down by 1 mg for 2 weeks until it makes sense to decrease by .5 mg and .25 mg to finally 0.--more on a percentage basis than a set number. That's my plan at this point.
I don't know about IVs. I am not into pharmaceuticals. A pill is bad enough, but an IV sounds horribly invasive.
@chris1466 I really related to your 9 months coming off prednisone, 6-8 weeks off, then right back on again. I really don't want to repeat this! Again! I do not have a rheumatologist but like my primary care physician (PCP). I am convinced that we are all in the experimental stage and what works for one person may not work for another.. Prednisone is wreaking havoc in my body but untreated inflammation is dangerous. I had worked for a short time with a naturopath who took me off Turmeric-Curcumin, Boswelia, vitamin D and YinChiao (formerly taken as needed when a virus was coming on) citing the supplements alter the effectiveness of Prednisone. It is recommended to hold off on these supplements while on the drug. Well, I'm reasoning...if these supplements make Prednisone less effective, would they possibly have a role to play in the weaning so that our bodies can get back on track even while dosing it with the Pred? I know our stories are individual, but once I am to the "magic" 7.5 dose and starting to slow down the taper, I am thinking seriously of doing so for one week and on the second week adding back in the Turmeric-Curcumin. That way I am decreasing and then making it less effective (repeating systematically with each step). BTW for this relapse I ignored the advice not to take Vit D3 to help absorb calcium. I believe I need it given Prednisone's eating away at my bones and teeth (and hair and consequent pre-cancerous spots on my scalp).
I have been told by another body worker that the qualities of the Turmeric-curcumin vary greatly; that the generic box store products are practically worthless. I have been recommended the Euromedica or Terry Naturally brands available at some supplement online stores. I am going to go with the high-quality product. Wish me luck! Meanwhile chris1466, I will investigate naltrexone. I do want to get off Prednisone before it kills me. (My heart beat is such that my Oura ring keeps feeding me high stress warnings. Big black cloud riding over me.)
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