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
@monigue
For what it's worth, I am 83, have had arrhythmia, am on Eliquis, and have been on prednisone for PMR for the past 12 months. I have tapered from 40 to now 7 mg a day with the recent help of Kevzara. No heart problems. Just recurring pains from osteoarthritis that were concealed by the prednisone. I will get the annual cardiology check in the next few weeks and will let you know if I have problems caused by prednisone but so far so good.
You might investigate Kevzara as an alternative to prednisone. Most of us seem to use it to help taper off prednisone but it may be an alternative to prednisone which would be wonderful. Expensive though if not covered by insurance.
-
Like -
Helpful -
Hug
2 ReactionsHi my ESR is 88 I was wondering if anyone has had a high reading as this. Also I’m trying not to take steroids as I have osteoporosis and glaucoma, has anyone got their inflammation down without taking steroids I’m really struggling at the moment as of what decision to take.
I have just had to reverse a tapering off of Prednisone. I started at 20mg and made it down to 8mg and the pain came back with a vengeance. My Dr. advised I go back to 10 which I have done. It is helping. However he wants me to consider Hydroxychloroquine, Methotrexate, or Kevzara as alternatives to Prednisone. Does anyone have any experience with any of these alternatives they would like to share? I have an appointment coming up very soon and any information I can get is helpful. I have read up on potential side effects of each of these but that is not a total deciding factor. The odds of a side effect can be million to one but if you are the one it does not help. Thank you for any info you may share.
You might want to consider Kevzara but it doesn't decrease your pain as quickly as Prednisone does. A biologic might be your best option simply because of preexisting osteoporosis and glaucoma. Kevzara is well suited for people with PMR who can't tolerate Prednisone or for people with conditions that are exacerbated by Prednisone.
You need to give Kevzara up to 3 months for the "full effect" but it will lower your ESR quickly. You will most likely still have pain when you start Kevzara. Prednisone is usually still given as a "bridge" to rapidly relieve your pain until Kevzara has time to reach its full effect. With any luck, you should be able to reduce your Prednisone dose quickly when Kevzara is started along with Prednisone. You could just "tough it out" and take Kevzara alone but most people like the immediate pain relief that Prednisone provides.
Kevzara is costly. Some insurance companies "require" Prednisone to be tried first for PMR and then maybe a DMARD like methotrexate. In your case, you may need to submit an authorization request for Kevzara and the reasons why Prednisone is contraindicated. Preexisting osteoporosis and glaucoma are very good reasons for not wanting to take Prednisone.
@ttorre44 - You will notice that we merged your post into an existing discussion on the same topic so that you can connect with other members like @dadcue @cwbf @mun68 and others who have posted about alternatives to prednisone for PMR. If you click the link below it will take you to the beginning of the discussion to learn what others have shared.
--PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
-
Like -
Helpful -
Hug
1 Reaction@johnbishop
its been over a year since i came off Prednisone for my severe bout with PMR and recently i have starting to get mild to moderate flare ups again and do not want to go back to prednisone. Someone suggested I look into a "Low Dose of Naltrexone"
Does anyone in this group have any experience with this drug?
Rooster 65
-
Like -
Helpful -
Hug
1 ReactionOn May 26 I saw my rheumatologist. She lowered the prednisone to 7 1/2mg for 2 months. I do take a 200mg Kevzara shot every other week. So far, I am not having any flareup. The rheumatologist had been lowering my prednisone 2 1/2mg every month, but wanted me to stay at 7 1/2 for 2 months. I started at 20mg. in October of 2025. I have not had any side effects from the Kevzara.
-
Like -
Helpful -
Hug
1 Reaction@rooster65 - I haven't tried low dose naltrexone (LDN) but my PMR is currently in remission. There is a discussion on the topic:
-- Low Dose Naltrexone and Prednisone for PMR?
https://connect.mayoclinic.org/discussion/ldn-and-prednisone/
@dadcue
I've been diagnosed with SMM two months after my PMR diagnosis. Now I'm doing a fast taper off prednisone because of the SMM. I have to discuss kevzara with my rheumatologist this week.
@rooster65 I am on Naltrexone and I am on 1.25 mg of prednisone, having tapered down from 15 mg of prednisone. I tried quitting totally the prednisone and pain came back. I am going to try to go off prednisone again this next week. The naltrexone seems to handle the pain well.