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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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Labs drawn last Friday. Awaiting results. Rheumatology appt the 26th.
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1 ReactionHi @marieameehan, I started taking prednisone mid-May of 2021 for PMR and GCA, 40 mg. I went into remission and stopped taking it a few weeks ago. My osteoporosis started before that but was diagnosed after I started the prednisone. I decided to take alendronate. Like John, I eat more calcium, plant based diet, etc. I take supplements that are supposed to help bone health - boron, Vitamin D, Magnesium, Vitamin K. Collagen is also supposed to help. I'm on the fence about strontium so haven't taken it. @windyshores has researched it, @bunky44 may have started a supplement with it, and I'm not sure what @callallo is doing. Maybe they can fill you in. Can you exercise at all? You can Google Dr. Loren Fishman's " Twelve Poses vs Osteoporosis" - it's 12 yoga poses that have improved bone density. There are 3 versions - one for osteoporosis, one for osteopenia, and one with the regular poses. I started doing them as soon as I found out about them because I would like to get off the alendronate. By the way, Algaecal has posted videos of the three versions of the poses separately, also on YouTube. Sara Meeks has also done extensive work on exercises for osteoporosis as has Margaret Martin, MelioGuide (you can google them). Unfortunately, I don't know of any other treatment for PMR and GCA other than corticosteroids, which because of their side effects, most doctors want their patients to taper down as quickly as possible. I hope this helps and I wish you all the best.
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2 ReactionsHi Marie,
I’m new here myself, but I have been researching LDN as a treatment alternative. You may want to read up on it too. Still experimental, but good results. I personally know someone who was helped off of prednisone with it.
I have been on LDN since mid 2019 and it definently normalized my small intestine, which was full of small ulcers (I have Crohn's). And it stopped my night pain within two days, miraculously. But alas, I have still had to take pred for the day time pain, so I don't think it is a cure all for PMR. Others may have a different experience and I think the vivid dreams which do go away (mores the pity) are a real hoot. I think it is worth a try and may at least partially help. It is known to be an anti-inflamatory and does not seem to have harmful side effects. You will have to go to a compounding pharmacy for it, as it is an off label use.
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2 ReactionsAn additional info about LDN- you will need a script for it, likely from your rheumy. They are the doctors that have the most knowledge of it. It will compete with opiates so you will have to clear your system of it if you are going to have surgery. Also, it competes with kettemene (sp?) even 'though it is not an opiate. (Found out the hard way there.) But I would not be without it, by any means.
God Bless you. You have a good attitude for what you are going through. I’m in such pain, but the prednisone does not alleviate it. Thus, I am down to 1 mg and will stop entirely Nov 1.
I figured that the inflammation is gone, and taking prednisone took my blood pressure way up and the pressure in my eyes was over 30. I was shaking and couldn’t hold a pen. I feel much better without the prednisone, but I am in horrific pain. For me, the value of my life has been so greatly diminished that I see no point in battling this for years. What for? Ugh.
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4 ReactionsI have just read that those with PMR and residing in Florida can now receive medical marijuana treatment!
You may get an appointment for medical card and meet with a qualifiedMedical Marijuana Doctor to get the ball rolling !
What good news !!!
Marie Meehan
I love your sense of humor!! I had the best laugh I have had in a while, but am so sorry you are having such a difficult time. I have been on prednisone since April. Started at 10 mgs for about 4 days, got an eye infection and panicked. So, my doctor reduced to 2.5mgs and I have been on that until about two weeks ago. It did not control the pain anymore. Now, I am on 5mgs. However, today the pain is back somewhat. I tried Methotrexate and it caused pain in my upper abdominal area so we discontinued it. Still on pred at 5mgs currently. My rheumatologist has not suggested anything else. I fear getting GCA so will stay on prednisone I guess. He did suggest that I get NO boosters for Covid!!! This all started after I got the Covid vaccine. We will keep on and pray for a solution to get off the prednisone.
My last bone density test was normal, but as I am on prednisone I am concerned about bone health. Another factors I deal with is high blood density. So, my rheumatologist advised to lower dairy intake. What about my bones?? I had a parathyroid hormone test and it was normal. So, what do I do about bone health?? Anyone else had this dilemma?
Actually, that is high calcium in the blood! Not high blood density.