Alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20 8:11pm

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?

I am new to this mayo clinic group but I’ve had PMR for five years. I am 67 years old and every nine months I would come off the prednisone and then it would come back within 6 to 8 weeks
Then I would start the whole prednisone thing again for another nine months off a couple of months and then it would return

My doctor had me try low-dose naltrexone
I have it compounded and I have been off prednisone and in remission for 7 Months

I take 4.5 LDN daily and drink celery juice 3 to 4 times a week when I can find it organic.

I don’t know if this is something you would like to consider but do some research on the LDN

REPLY
@chris1466

I am new to this mayo clinic group but I’ve had PMR for five years. I am 67 years old and every nine months I would come off the prednisone and then it would come back within 6 to 8 weeks
Then I would start the whole prednisone thing again for another nine months off a couple of months and then it would return

My doctor had me try low-dose naltrexone
I have it compounded and I have been off prednisone and in remission for 7 Months

I take 4.5 LDN daily and drink celery juice 3 to 4 times a week when I can find it organic.

I don’t know if this is something you would like to consider but do some research on the LDN

Jump to this post

Thank you! I'm open to all possibilities!

REPLY
@ronhonn

Thank you! I'm open to all possibilities!

Jump to this post

Oh! Where does the celery juice fit in? This is interesting, and I'm open to anything that will help.

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@ronhonn

Oh! Where does the celery juice fit in? This is interesting, and I'm open to anything that will help.

Jump to this post

The celery juice doesn’t really fit in anywhere, I just think having some juice before starting the day is a good thing ,and for me being in remission this long I don’t want to change anything ,because things are going right.
I’m not saying that’s the answer, it just works for me the game changer was the LDN.

REPLY
@chris1466

I am new to this mayo clinic group but I’ve had PMR for five years. I am 67 years old and every nine months I would come off the prednisone and then it would come back within 6 to 8 weeks
Then I would start the whole prednisone thing again for another nine months off a couple of months and then it would return

My doctor had me try low-dose naltrexone
I have it compounded and I have been off prednisone and in remission for 7 Months

I take 4.5 LDN daily and drink celery juice 3 to 4 times a week when I can find it organic.

I don’t know if this is something you would like to consider but do some research on the LDN

Jump to this post

I will definitely ask my Dr. about this low dose naltrexone but I will pass on the celery juice/ Have you had ANY side effects to the LDN?

REPLY

Started with .5 & increased every week till 4.5
Have to take it in the am cause it kept me up , but not too bad
I had very visual dreams at night for a month or so
Other than that …no

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Thank you for your reply. It is good to know that you are not experiencing any bad side affects. I will certainly check it out.

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