PMR: Are there treatment alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20, 2020

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

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

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@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

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Thank you! I'm open to all possibilities!

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@ronhonn

Thank you! I'm open to all possibilities!

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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.

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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.

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@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

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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?

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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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I am newly diagnosed with PMR. I just started 20MG of Prednisone yesterday and feeling the improvement in mobility already. However, I have a history of being unable to tolerate this drug. My Rheumatologist has prescribed 20MG for the 2 weeks, then 17.5MG for 2 weeks, then moving to 15MG and slowly tapering each month. I friend of mine has mentioned I should inquire about starting IV therapy in combination or alternatively. Has anyone had experience with this approach? I'm extremely concerned about side effects of Prednisone. Thank you for your thoughts.

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@mikeshell

I am newly diagnosed with PMR. I just started 20MG of Prednisone yesterday and feeling the improvement in mobility already. However, I have a history of being unable to tolerate this drug. My Rheumatologist has prescribed 20MG for the 2 weeks, then 17.5MG for 2 weeks, then moving to 15MG and slowly tapering each month. I friend of mine has mentioned I should inquire about starting IV therapy in combination or alternatively. Has anyone had experience with this approach? I'm extremely concerned about side effects of Prednisone. Thank you for your thoughts.

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Hello @mikeshell, Welcome to Connect. I think it's always a good idea to review your treatment options with your doctor or rheumatologist, especially given you mentioned having a history of not being able to tolerate prednisone. There is another discussion that you might find helpful.

Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

@kimh, @mgrogers, @tsc and others may also have some thoughts or suggestions based on their experience with PMR.

Do you mind sharing which side effects of prednisone concern you the most?

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@mikeshell

I am newly diagnosed with PMR. I just started 20MG of Prednisone yesterday and feeling the improvement in mobility already. However, I have a history of being unable to tolerate this drug. My Rheumatologist has prescribed 20MG for the 2 weeks, then 17.5MG for 2 weeks, then moving to 15MG and slowly tapering each month. I friend of mine has mentioned I should inquire about starting IV therapy in combination or alternatively. Has anyone had experience with this approach? I'm extremely concerned about side effects of Prednisone. Thank you for your thoughts.

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Thank you for the information. Initially, my main concern is the effect prednisone has on my stomach and the fact that if I don't eat a substantial meal, my stomach hurts, and I'm concerned ulcers will develop. The feeling of heightened anxiety and restlessness is hard to manage. I always feel very much on edge. I also have 6 cardiovascular stents and I'm concerned prednisone will cause plague buildup and/or rigidity in my arteries. Prednisone also can reduce the effectiveness of Metoprolol (which I currently take) and I have been unable increase the dosage of Metoprolol because it causes skin rashes, etc. I know there isn't a magic bullet to fix this condition; I'm hoping to find a solution that is less intrusive to limiting my active lifestyle. Thank you very much for your thoughts or suggestions. As this is a new disease for me, I'm really trying to learn as much as I can to help me make educated choices.

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@mikeshell

Thank you for the information. Initially, my main concern is the effect prednisone has on my stomach and the fact that if I don't eat a substantial meal, my stomach hurts, and I'm concerned ulcers will develop. The feeling of heightened anxiety and restlessness is hard to manage. I always feel very much on edge. I also have 6 cardiovascular stents and I'm concerned prednisone will cause plague buildup and/or rigidity in my arteries. Prednisone also can reduce the effectiveness of Metoprolol (which I currently take) and I have been unable increase the dosage of Metoprolol because it causes skin rashes, etc. I know there isn't a magic bullet to fix this condition; I'm hoping to find a solution that is less intrusive to limiting my active lifestyle. Thank you very much for your thoughts or suggestions. As this is a new disease for me, I'm really trying to learn as much as I can to help me make educated choices.

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Here are some sites that may be useful for learning more about PMR if you haven't already seen them.

— Rheumatology.Org – https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica
— Vasculitis Foundation – https://www.vasculitisfoundation.org/education/forms/polymyalgia-rheumatica/
— Arthritis Foundation – https://www.arthritis.org/diseases/polymyalgia-rheumatica

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@mikeshell

I am newly diagnosed with PMR. I just started 20MG of Prednisone yesterday and feeling the improvement in mobility already. However, I have a history of being unable to tolerate this drug. My Rheumatologist has prescribed 20MG for the 2 weeks, then 17.5MG for 2 weeks, then moving to 15MG and slowly tapering each month. I friend of mine has mentioned I should inquire about starting IV therapy in combination or alternatively. Has anyone had experience with this approach? I'm extremely concerned about side effects of Prednisone. Thank you for your thoughts.

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Hey mikeshell,
After dealing with a great deal of discomfort in my upper legs and upper torso for a number of months, I was eventually diagnosed with PMR in July 2020. I received almost immediate relief from a 20mg dose of prednisone and started a 10-month taper. Fortunately I experienced only minimal side effects from the prednisone (mostly some weight gain). Near the end of my taper, some of the discomfort returned, but not nearly at the level I had experienced earlier. About a month after weaning off the prednisone, I began to experience mild headaches and some jaw discomfort. After doing some research, I decided I should see a rheumatologist, made the appointment, and within days was diagnosed with Giant Cell Arteritis in June 2021. At that point I started another 10-month prednisone taper and also began receiving monthly infusions of Actemra. If you would like to connect with others in your situation, I would also suggest you visit: https://www.vasculitisfoundation.org

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