My chiro says many of his patients with PMR have it burn out between 5 and 7 years!
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My chiro says many of his patients with PMR have it burn out between 5 and 7 years! If I am right I've seen it said here that about 25% of people have it go away by the 5th year but correct me if I am wrong. In any event I mention this because my chiropractor 'blew me away' with his remark because it seemed to me that one had to be really lucky for PMR to go away AT ALL! I've had it 3 years and keep trying to taper slowly but back it comes with a vengeance! I'm at 7 mg of Cortisone now, (it's similar to Prednisione), and yes even with my flares up I don't have to increase it a lot but I really find it hard to believe I can ever get it much below 5. Have any you seen or heard encouraging comments like those of my chiro, and I don't mean like one or two cases only where the PMR went away?
0 likes, 33 replies
Anniecurd leonard12916
Posted
I was diagnosed last August. started with 15mg and am now on 3mg of pred. Tomorrow I go to 2 1/2. My rheum wants me to be on 1mg by August 1st. I know from reading these posts that she is pretty ambitious, but aside from a little hiccup over Christmas, I'm hoping to get there. I just have to watch the stress. A lot of time you can't change what causes the stress (people), but you can change how you react to it.
Anhaga Anniecurd
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That's really excellent. I hope you are feeling well.
Anniecurd Anhaga
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I'm feeling pretty good most of the time, except for some occasional fatigue, which is to be expected. I do tend to overdo it. I do most of the yard work and house maintenance. Volunteer at an animal rescue. Have an antique shop. Make soap. Refinish furniture. I am restoring a 69 mgb. And am into watercolor painting. The only thing I haven't got to is the housework, but I'm hoping my husband will get the hint and pick up a broom.
Anhaga Anniecurd
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Re husbands and housework - don't hold your breath. I'm amazed at what you do. I couldn't do that much even when I was young and hale!
Anniecurd Anhaga
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I'm not good at sitting still, unless I really don't feel good.
faye______00403 leonard12916
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Everyone is so individual I don't believe any definitive statement
about when it will "burn itself out" I have a friend that has gotten
off pred twice and has to go back on when it comes back. I know
I'm going to be dealing with this for the rest of my life. I've had
it 3 years and got as low as 4mg when had a setback. I'm 79
to will just continue to do what makes my life bearable.
And......good luck to all those sufferers out there....we are legion.
Anhaga leonard12916
Posted
What I'm about to say I say with caution partly because I don't want to jinx myself. I'm female, late 60s, undiagnosed for a year, treatment started last June at 15 mg. Now at 3 mg. You can understand why I'm being cautious when I say this, and touching wood! So what might be different about my journey? I started from a place of relatively good health, not overweight, had a nice part time job (now retired) and live in a well established middle class community. Nothing unusual about my life at all. I was always moderately active, but not athletic, ate a good diet, didn't smoke and drank very little. So I start from a good place. With PMR and subsequent diagnosis of "low bone mass" I upped my game regarding diet, following all the usual guidelines re calcium and so on. Also made sure I was getting enough exercise of the right kind for both PMR and potential osteoporosis. I started getting low level light therapy (as an experiment to see if it would help) and other treatments from a physiotherapist and have been very proactive pursuing the best diet and supplements (a moving target it seems). So the main point I want to make is, I don't rely upon pred to make me better. We all know that it doesn't. From the very beginning I thought if all I did was dampen the symptoms but then return to the place where I was before all this started, I'd be likely to relapse.
I never thought my old age would be spent working so hard to get healthier and stay that way. But maybe, just maybe, that's why I'm so far reasonably successful. I touch wood again, because who knows what the morrow will bring? For example at my age there's always the possibility of another disease rearing its ugly head.
Regarding men and their often apparently easier journey - they start with stronger, larger bodies to begin with, and many have pointed out that the hormone balance is different and may respond better to pred.
nick67069 Anhaga
Posted
Anhaga said..."So the main point I want to make is, I don't rely upon pred to make me better. We all know that it doesn't. From the very beginning I thought if all I did was dampen the symptoms but then return to the place where I was before all this started, I'd be likely to relapse. "
Very well said.
I do recognize that we are all different, but it is important to not expect miracle from medication and do as much as we can to better chances for recovery.
Anhaga nick67069
Posted
I hope I acknowledged that not everyone has the good fortune to fall ill from a healthy starting place. Lots of us have pre-existing conditions which make it more difficult. I do wish the medical profession was a bit more alert to this, and more pro-active in helping people to achieve true health rather than flinging medications on top our diseases and hoping for the best. I also had the good fortune to be able to retire. Retirement, and perhaps my untreated PMR, made me very depressed for some time, but in retrospect the fact that I could rest when needed made a huge difference. And again, many people do not have that luxury. In the US, for example, I read of people who must continue to work, sometimes in emotionally toxic or physically demanding environments, or they'll have no health insurance. I think this is tragic.
Nefret Anhaga
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And then came PMR and tipped me right into this bucket of nasties that I have been dealing with since then. Multiple medical conditions popped up all over the place - at one point I was literally punch-drunk and wondering what would be next. A nice comfortable case of leprosy?
This thing that is PMR is so individual and I believe in some cases targets the thing we love most - in my case, my legs.
Anhaga Nefret
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Your turn of phrase made me laugh. I agree with you. I'm pretty good right now, hence my post. But it hasn't been easy to get here. I had some of the more troubling side effects of prednisone, and an initial, incorrect, diagnosis of osteoporosis, made me feel much as you describe yourself. I did indeed keep wondering why, every time I picked myself up, something else would come along and knock me down. PMR and pred are a two-headed dragon and the trick is to keep them headed in the same direction, towards reduction and recovery.
kitsalley leonard12916
Posted
I've read PMR USUALLY last 1 to 2 years but most of the folks in this forum seem to have it much longer. I was hoping for two years . . . but now I'm just trying to figure out how to live with it 'one day at a time'.
Also seems like most folks aren't concerned about staying on Prednisone for longer periods of time. My doctors see to be in a hurry to get me off of it.
Anhaga kitsalley
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leonard12916 Anhaga
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thanks for your encouragement Anhaga. I mentioned the other day in a new discussion I created that I had the beginnings of a rash on the lower part of one leg which has tapered off and I think may have been caused by eating too many raspberries from my garden. Low and behold I noticed today at the top of the same leg's inner thigh a red itchy rash! I've read that this is not uncommon with auto immune diseases but at the same time it says steroids help correct the problem of rashes; seems like a real conflict. I'm surprised that after 3 years on steroids this issue is suddeny appearing. Might you have some thoughts on how to deal with this or know of a previous discussion where this has come up? Should I create a new discussion to get feedback?
Anhaga leonard12916
Posted
Sorry, just noticing this. Can't help I'm afraid. I had itchy dry skin pre-pred and the pred cleared it up (no rash) and still ok. Check with your doctor.