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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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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?
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.
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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3 ReactionsHey 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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5 ReactionsWelcome @minijohn, Thank you for sharing your experience with PMR and GCA. It is really helpful to learn from the experience of other members with PMR and associated conditions like GCA. There are some other discussions you might also find helpful.
-- PMR connection to GCA: https://connect.mayoclinic.org/discussion/pmr-connection-to-gca/
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/
-- Medications for Temporal Arteritis/Giant Cell Arteritis (GCA): https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/
Do you mind sharing how you found Connect, were you searching for answers for any specific questions?
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3 ReactionsJohn, I believe I discovered Connect through an email from Mayo. Thank you for the links.
I just finished watching this presentation: https://www.vasculitisint.com/videopatientconferencedublin2022/?playlist=9a9bc86&video=11d3b70
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2 ReactionsIs there any other treatment for Polymyalgia besides steroids???
Hi @kristina8502, Welcome to Connect. You will notice that we moved your post to an existing discussion listed below on the same topic so that you can meet other members asking the same question. If you click the link below, it will take you to the top of the discussion so that you can read what other members have shared.
-- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
You may also want to take a look at the following discussion:
-- PMR and Methotrexate:
https://connect.mayoclinic.org/discussion/pmr-and-methotrexate/
Have you been diagnosed with PMR and started on prednisone?
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3 ReactionsOrganic celery, lettuce, carrots plus other greens are better than just celery. Celery has a high percentage of salt.
Maybe this is all due to watching the wrong shows. Just kidding. You started on a high dose. I thought my 40mg was high. It has taken me almost 3 years to taper to my last week on 1/2 mg. I have pain again and when I see my Rheumatologist on Wednesday I am hoping blood work will be normal. It has caused other issues for me gaining a little weight, being hungry all night, elevated blood sugars and a stress fracture from just walking. Definitely, want off of this. I am taking Celebrex on some nights. I'm determined to ride this out. I will discuss with doctor, if there are any other alternatives if the pain worsens anymore. Good luck and feel better.
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