Pmr and reduction of symptoms)
Posted , 21 users are following.
this is probably the dumbest post ever, but I obsess over things, so here goes: some people with pmr are never pain free. I am one of those people, I got pmr in August, 2016, started pred late September 2016. I am never pain free. And I have lots of pred side effects, the common ones: increased blood pressure, blood sugar, weight gain, etc. on a good day I can walk 5000 steps but only in short spurts.
here is my question (my husband says I'm nuts): if I am never pain free, and never have been, how will I know when I am pmr free as I reduce on the pred? Right now I'm using dsns to get to 6 mg, I'm not any better than I was since I started pred. I've always had groin stiffness and leg muscle pain especially in the mornings.
So...let's say I manage to work my way down to 1 mg. pred...and I still have the same level of stiffness and soreness that I've had all along....I'm assuming I can't get off the pred because the pmr is still active, and I sure don't want a flare.
Please don't tell me to increase the pred right now...I've done that a couple times, all the way back up to 10 mg...no difference whatsoever, but remember, I'm not one of the ones who is pain free...I've never been pain free. Before I started on the initial dose of pred (20 mg) I was bedridden with pmr pain--had bad case.
i guess my question is: when and if the pmr burns itself out, shouldn't I expect to be eventually pain free before I can get off the pred altogether? (Yes, I understand that some people never do--but I'm just sitting here obsessing over life in general so thought I would turn to you all for thoughts). Thank you!
2 likes, 32 replies
Frit Twopies
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Twopies Frit
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What I’m trying to figure out is if I’m never pain free, that must mean the pmr is still active. So what happens when I reduce even further? Surely I can’t get off the pred completely as long as I have the stiffness? This is how I’m spending my holidays...obsessing over the future. Thks for your thoughtful post....
audrey80537 Twopies
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I have had PMR for almost three years. I still have times when I feel pain or fatigue but nowhere near what I felt in the beginning. I had a very difficult time reducing with multiple flares and Now with the help of alternative means I have gotten to 5 mg.
I also have OA so sometimes it’s difficult to know exactly the cause of pain.
There are alternatives available for some of us to help with the pain one of which is cannibis or medical marijuana. Aside from reducing pain it may also help with weight reduction and blood pressure. Sad part is it’s not available to everyone.
Wishing you the best and happy holidays
Frit Twopies
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Twopies Frit
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constance.de Twopies
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I wish you luck and hope you have the strength to deal with this pesky illness. You are not alone.
Constance
Reeceregan Twopies
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Twopies Reeceregan
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Some days are better than others, admittedly. Increases in pred haven’t made an appreciable difference...I was never 100% pain free at the starting dose and the side effects were enormous.
I do what I can to make life livable. As do you. Thanks for sharing!
Reeceregan Twopies
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Exactly. As you say, if we feel the same at 6, will we feel the same at 1: so is this the “feel”... is this how it’s going to be. One dr in the beginning told me I’d Be on pred for life because of the severity of the conditions in the beginning, now they are hell bent in getting me off it. Crystal ball might help. But we still, get up, dress up and show up, and rest up when we have to. THanks for listening and please keep posting here with your progress. Good luck 💪
Twopies Reeceregan
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EileenH Twopies
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Reeceregan Twopies
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EileenH Reeceregan
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Apparently PMR has been seen to present as "steroid reversible parkinson symptoms"...
Yes - it's funny isn't it when you get talking to someone and suddenly you are talking a common language
Reeceregan EileenH
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That’s interesting Eileen..about steroid reversible Parkinson symptoms. As for the common language, it’s really weird because everyone’s heard of all the different arthritis, Parkinson’s and Lupus but I wrongly assume I’m the only one in the world who has this one ( she jokes) so I fob it off a bit when they ask...only to find every other person either has, or knows someone who has it and the language sure does change. And aren’t they happy when I mention this forum! Their eyes light up as if they’ve just heard their long lost friend has just been found ...bit how I felt when I joined. 🙌🏻
EileenH Twopies
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Has your rheumy done any other investigations? Having PMR doesn't excuse you from other disorders.
Have you been looked at for trochanteric bursitis? That would fit with the pain and stiffness you describe. That may respond to oral pred - but not always. It responds far better to local injections - and NOT necessarily intraarticular ones (into the joint) so it is easy enough to have done quickly. I also have myofascial pain syndrome - which parallels my PMR. if the MPS is bad, I need more pred to manage the PMR part and for some people they wouldn't know which was which - I have had a LOT of practice!
But the bottom line is that what you got rid of at the start with the pred is likely to be PMR. What was left is something else. Any increase on that as you reduce the pred is probably PMR-related.
Twopies EileenH
Posted
My docs seem to think that my groin and upper thigh stiffness is pmr...remember, I was never pain free on beginning dose pred. Yes, I was completely pain free in my shoulders, arms and legs. By current pain I mean this stiffness, especially in mornings or after over exerting myself. I am very limber—I can move my shoulder and hips in a complete circle, no problem. Thanks for your reply as always...I have had myofacial pain in my neck for 18 years, lotsa treatments, lotsa docs.