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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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Hi @wv54, I moved your discussion and combined it with an existing discussion titled: "PMR: Are there treatment alternatives to Prednisone?" - https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
I did this so you, @bradninchgirl and @edinnola could see what other members have posted about in the past in regards to alternatives and struggles with prednisone.
@wv54, you mentioned that what you do in the course of a day dictates how your next day will go. How much are you limiting yourself because of this phenomena and have you discussed your limitations and frustrations with your provider? Is this a reason you are thinking about seeking a new one?
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2 ReactionsMy daily activities might include ladder work - a lot of walking - bending - lifting - etc. ---- the next day are usually pretty rough --- I mentioned the thigh pain to my rheumatologist. The response was I might need to increase the prednisone -- but, the rheumatologist I was seeing is no longer available. --- This is the 2nd one. I'm thinking that maybe I should scout out for another - it will require that I travel between 2 1/2 and 4 hours.
About 7 weeks ago I started my treatment for PMR with 400 mg of Plaquenil (Hydroxychloroquine). I have progressively gotten improvement, especially in late morning into the evening. My early mornings have very recently gotten to the point where yesterday afternoon and even this morning I started playing pickleball after stopping at least 3 months ago. I have not read about anyone else taking this drug either on the internet of this group.
I would be interested in hearing from anyone that is taking Plaquenil. Thanks.
I also started Plaquenil (Hydroxychloroquine) (H) about 5 months ago. I do not feel I sleep as well and have had weird dreams. I have been on and off prednisone (P) for 30 years due to PMR. I was on 10 mg P when I started H and am now on 4 mg P. I have never been able to reduce P so quickly and without any relapse as with H. I do have arthritic pain, but no PMR pain. What do others with arthritic pain take for that type of pain?
It is reasonable to try Plaquenil when prednisone therapy is considered
contraindicated or likely to present long term side effects. The drug
has a known track record in connective tissue rheumatic disease.
If your symptoms include signs of arthritis and synovitis there may be
overlap in the diagnostic process. Lab results can show confounding
or non helpful input. Hydroxychloroquine is slower acting then prednisone
if you have PMR. A consult with an ophthalmologist is recommended for
long term therapy with both drugs. My experience with acute onset typical
polymyalgia was rapid response to prednisone and total symptom remission.
The required treatment masked an underlying psoriatic arthritis diagnosis
by the next rheumatologist in line. Ask questions and continue your research.
I have been on H for almost 7 weeks and fortunately I have not had any problems with sleeping or having any weird dreams. It seems that you are finding that H has had a positive effect in helping you reduce your P faster and of course this is a great benefit. Having never been on P and therefore I have no experience in that situation.
It seems to me that the combination is having more positive results than negative ones. Congratulations on having no PMR pain now.
Are you on 400 mg per day of H to treat PMR? Since I have been on and off P for 30 years treating PMR I know the signs of PMR. Since I have no signs of PMR I wonder if I am in remission.
My wife was recently diagnosed with PMR. I started researching atternatives other than prednisone. Having researched and experience with SARMs such as MK2866, Cardarine, MK677 that have proven to be ani-inflammatory as well as other natural anti-inflammatory supplements and diets, why are Corticosteroids the "go to" treatments when research has shown safer options?
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1 ReactionPlease let us know how your wife goes with those anti-inflammatory measures. As PMR is an auto-immune condition involving an over-reaction of the immune system, inflammation is only one part of it and prednisone is the only thing that reduces pain sufficiently for most people.
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1 ReactionPerhaps prednisone is still used because corticosteroids quickly relieved symptoms of PMR and were thought to be "relatively safe" when taken on a short term basis. I know of no other treatment that works as rapidly as prednisone does.
The belief is PMR will "burn itself out" relatively quickly in a year or two. The pain relief benefits of "short term" prednisone use outweigh the risks of side effects. Unfortunately the risk of significant side effects increases when prednisone is used "long term." The risks are directly proportional to dose and duration of treatment.
In summary, prednisone is a "quick fix" but not a good long term solution.
There weren't many alternative treatments available during the corticosteroid era for the treatment of many autoimmune disorders. Now, that has changed for some autoimmune disorders but PMR/GCA has some catching up to do.
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