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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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I was taking prednisone for five years and my CRP was high,so along with methotrexate my rheumatologist added Rabeprazole 20 mg, this is for RA usually but it has helped me far better than prednisone.
Hope this helps.
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1 ReactionLDN ( low dose naltrexone) I have 4.5 mg compounded for me & I take 1 a day
I am in remission almost 3 years after 5 years of PMR & prednisone.
Do some homework on this .
It’s a game changer for some of us .
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2 ReactionsGood thread. I haven’t posted in 6 mo or so. Still slaying the dragon called PMR, down to 4.5 mg. I’m
Tapering at .5 mg / month or 5 weeks and even then I’m doing a modification which entails taking 4 at 9 am then the .5 no later than 1 pm. I do this for a week before dropping to the next level. I’m due to drop to 4 any day now but taking it slower as I’m having some muscular issues. As far as sleep help I use an herbal tea with Passion flower ( no valerian) about 2 hours before bed, try to cut off any screen time, and I do have Passion flower tincture from my local herbalist. I go to sleep by DO NOT stay asleep thru the night. I accept this reality and just try to do deep breathing and rest. I’m just about two years into this journey. I too want off the steroid but know too swift a curtailment can be risky. I got GCA on my first bold tapering.. take care all.
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3 ReactionsVery interesting Chris. Did your rheumatologist prescribe? What side effects of the naldrexone? I’m going to read up on it. Is it an anti depressant or narcotic?
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1 ReactionThanks Teri. I had thought of Valerian as well, so I may just try your tea. I will forget about the Melatonin. When I'm down to a lower dose, hopefully I too will stop feeling like a super energizer bunny. Also, when my aunt had terrible osteoporosis, she in her 60's started doing Tai Chi. It was soft and slow and weight bearing and really helped her. She was in so much pain and to watch her do the fluid movements of Tai Chi was very inspirational. She also walked quite alot. Her sister, Ida, became a Yoga master in her 70's and lived to be 103 (just a side note). Two amazing sisters. Thanks again ~ Deb
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2 ReactionsWelcome @psmcdonough, I have not heard of systemic enzyme therapy used for PMR bud did just now find some information from August 2021 on fighting inflammation topic --- Reducing Bruising, Swelling and Pain with Systemic Proteolytic Multi-Enzyme Therapy: https://nutritionreview.org/2021/08/reducing-bruising-swelling-and-pain-with-systemic-proteolytic-multi-enzyme-therapy/
Are you looking for an alternative to prednisone to treat PMR?
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1 ReactionMy primary care Dr . Prescribed it .
It’s is made & used in 50 mg tablets as an anti narcotic drug , but they have discovered that 4.5 mg is helping many people with different problems .
At first I was hesitant but I was searching for a way get off prednisone once and for all. I had been nine months prednisone been off for three months and then it would flare up and come back and I did this for five years straight until finally I agreed to try the LDN. I had to start at a 1 mg dose and over 30 days go to 4.5 now I have a pharmacy compounded for me.
In August it will be three years PMR free
I wish you luck. I know how brutal this disease is
It has no side effects.
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3 ReactionsLow dose naltrexone (LDN)
Thank you Chris. I did a search on this drug and saw the low dosing data and micro-dosing too. The NIH paper 2018 is quite technical. Thankfully my spouse is a biochemist/ clinical pharmacist/ basic researcher. He gave a light read and will follow up. Sounds very promising. Did you stop the P and start the N at the same time or cut one and add the other? I’m two years in and I think I’m having a flare right now, the last week has been brutal. It’s my second attempt at tapering, honestly I couldn’t go much slower this time. Thanks for your information, really useful and glad you found a solution.
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1 ReactionI hope you find the perfect timing to switch and get her off prednisone onto LDN..
I waited a couple of months after prednisone before starting LDN as I felt a flare coming on… I started on a very minute tiny dose and compounded it myself with my doctors permission until I reached 4.5 and got tired of compounding it and found pharmacy to send it to me every six months..
I’m glad you have your husband support and hopefully this might be an answer for you let me know how it works out…
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