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?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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Mehtotrexate is not an alternative to prednisone. It can be used for polymyalgia rheumatica as a steroid sparer. So for some people having difficulty tapering, methotrexate may help alongside prednisone. Effectiveness data of methotrexate for PMR as a steroid sparer is questionable, and there are possible side-effects .
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4 Reactionsyes that’s my understanding as well. I’d be willing to try it in low doses if it helps reduce the steroid dosage even more.
Hi everyone, This is my fourth episode of PMR 1n 10 years - groan. For my last session in 2018 I had difficulties in weaning off prednisone and the methotrexate seemed to help. I've attached a graph which shows on the X axis 'time since onset' and the Y axis shows the values. It shows that each time I tried to decrease the prednisone I had an increase in pain. The medical text "UptoDate'" has this to say about using methotrexate to help reduce prednisone "Data from randomized controlled studies on the efficacy of MTX as a glucocorticoid-sparing agent are mixed, though generally favorable results have been reported with regard to cumulative glucocorticoid doses, relapse rates, and time to discontinuation of glucocorticoid treatment [42,43]. Interpretation of a negative controlled study on the use of concurrent MTX is limited by a high dropout rate [44]. These data, however, are limited by several factors including the small number of patients studied and by the relatively low doses of MTX used (in the range of 7.5 to 10 mg/week) compared with contemporary doses (in the range of 20 to 25 mg/week). Also, no study has demonstrated an actual reduction in glucocorticoid-related adverse events in MTX-treated patients compared with patients treated with glucocorticoids alone." For my present episode, I've started again on methotrexate to hopefully reduce the total time on steroids - keeping my fingers crossed! However, the methotrexate does require monitoring and frequent blood tests. Oh, and booze not allowed 🙁 Hope this helps.
Hi @guillamocan, Welcome to Connect. I've had 2 episodes of PMR since 2007 but have been in remission since 2018. I've only used prednisone for treatment but my taper off time the second time around was 1-1/2 years vs 3-1/2 years the first time around with PMR. I attribute a lot of this to lifestyle and diet changes after my first bout with PMR. Just curious if you have made any lifestyle or diet changes to see if they might help?
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1 ReactionHello John and thanks for the feedback. Yes, indeed lifestyle and diet changes are so important, actually essential. I already had a healthy lifestyle but I needed to be even more vigilant with my lifestyle as it was hampered by the limitation of activity (initially) and the effects from prednisone (with weight gain). One source of excellent advice was from Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis"
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2 ReactionsI really like your chart. I also keep a daily pain journal but I have been on MTX from the point that I was at 20 mg and I have not experienced the dramatic swings in pain other than a few that were caused by specific actions like overusing an jig, reciprocating and circular saws over a short time period which caused my shoulder to scream, but only to a pain level of 4 and which disappeared after 3 days of Tylenol and no increase in Prednisone. I inject my MTX; wonder if others do. I am at 4 mgs but my body seems to be telling me not to push lower and to stay at this level a bit longer. My journey is only 9 months long so I shouldn't complain.
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1 ReactionThe graph is simple to make with an excel spread sheet. For my graph the headings for the various columns were 1) Days since onset 2) pain (peak) levels out of 10 3) prednisone (mg taken). 4) methotrexate (mg taken). In a more recent graph, I added a "T 1/2" column which represented the time to decrease to 50% of the peak pain level. I found that the graph was very useful to share with my physicians. For this recent episode, I started at 15 mg of prednisone, but had to increase to 25 mg to control the pain. At present, I'm at 15 mg with the weaning off process and I'm at 4 months since the onset. Taking 15 mg methotrexate pills. Since the main side effect of methotrexate (for me) is fatigue and drowsiness, I switched from a morning dose to the evening - works better. Hope your journey goes well.
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2 ReactionsI 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.
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.