I haven't posted for some time and just lurking LOL. I was diagnosed with PMR year ago this past March, having symptoms 6 months prior to that. Of coarse having all the symptoms everyone else has with this awful disorder. I have been seeing my Rheumatologist every 3 months. She has had me tapered to 5 mg of pred several months ago. But having a bunch of 1 mg I decided without the Rheumy knowing, to taper down more. So went from 5 to 1 over a few weeks. 3 weeks ago I stopped altogether mainly because I hated the weight gain, the bloating and just feeling so BLAH while on pred. So it's been 3 weeks off and I feel absolutely wonderful. Starting to loose weight, and just feeling great , sometimes I have some slight stiffness but I just exercise to get rid of it. I have been working full time through-out me PMR journey. So folks I just pray that I will not fall into that PMR pit again ... thanks for listening :o)
Pred Free for 3 weeks: I haven't posted for some... - PMRGCAuk
Pred Free for 3 weeks
Makes you wonder if how many people are over prescribed. I think you are your best doctor and sometimes you have to do what the body feels rather than somebody that knows little about how you really feel. I really hope you stay well as it seems there is a risk for a flare.
How exciting for you PaulinaCanada. We are the experts in our own body, and as you've probably heard on this site, symptoms rule. So thrilled you're not feeling any pain and have been able to taper off pred if it was causing your problems. To go down from 5 to 1 over a few weeks is VERY fast, and usually I hear more about how this last stretch is the most time consuming and difficult as our adrenal glands are kicking back into action (yours sound like they are working just fine if you're not fatigued, etc).
Sounds like, for you, the condition may be in remission. Either that or symptoms will eventually return and you may need to go back on pred (sure hope it's not the latter). I'm not sure I would embark on such a final reduction without the supervision of a doctor, but many of us on here are monitoring our own progress and taper. I do truly wish you all the best moving forward. Please keep us up to date with your progress. Your story is very inspiring and gives me hope that some day I too may be finished with PMR/pred. Enjoy feeling well......something I will never take for granted again.
thank you ... I realize that it may return and do have a supply of pred on hand
What a wonderful story. I am glad the planets aligned for you. Go well!
Hey Paulina, what was your secret to kicking it so well? Cool Canadien weather? Hockey? Maple Syrup? Molson Beer?
No really, I'm sure people are interest in your success path..
I have access to all those things, and legal marijuana, but no such luck!
LOL no Canadian things involved . I am surprised because of hearing about people having this for 5 years plus, Rheumy said I would be on pred for several years but I just hate what that drug does to everything else. As I said I have worked through out everything pain included. I guess what I have done different is maintaining exercise even when it hurts, get plenty of rest involving sleep, not just a little break. Eat healthy and wholesome. I eat lots of fruits and veggies, very little meat only fish, chicken or turkey. I eat cheese and lots of yogurt. I do not eat anything processed, no sweets (tiny amount ) no salts ... everything I eat is whole food and not laced with processed chemicals. For supplements I take calcium, vit D, Vit C, Magnesium, Hyaluronic acid and a multi vit. I exercise , walk, hike and some weight lifting ... that's about it , hopefully I do't have a relapse ;o)
Oh forgot to mention ... one of my major stress problems is now out of my control and not worrying about it .... eliminate stress is a big factor
It’s really good to hear success stories and what kind of sacrifices it took to achieve wellness. It’s a fine line to walk with this condition. Too much of something or too little of something seems to make you or break you
Great - but do please be on the look out for any adrenal problems. 5mg pred is plenty for the body to function on, 1mg won't be if your adrenal function is lagging behind and you experience severe stress of any sort. It is a lot for the body to adjust that amount in the space of just weeks.
wouldn't adrenal problems have popped up by now?? This adrenal thing is what I don't understand...I imagine I would feel really horrible and lethargic I went off and they weren't working...wonderful for this person though...im at 5mg and every small taper results in a couple of days of feeling sort of crappy...I don't want to yo-yo up and down so I try to stick with it...5mg is a nice dose right now...
There may be enough function to manage day-to-day and not feel "off" but in an extreme situation there may not be enough. Even while on 10mg (or more) you might have problems in response to trauma, surgery, serious illness.
Karools on here felt fine at 2mg pred - but the synacthen test shoewed she had no adrenal capacity at all. As I say, you might be fine - until something happens. We are supposed to carry a steroid card for up to a year after stopping pred altogether - and that is why.
thanks for the prompt reply..as I say, this adrenal piece of the PMR puzzle is what I don't really understand...without that test a person would have no idea how its functioning...
I suspect a lot of doctors struggle with it too!!
oh I'm finding that out...my dr is no more knowledgable than I am with PMR...he know prednisone and Its side effects I guess but as far as PMR goes I'm his second patient with it...he "thinks" another person has it too...so far I'm pleased with him though we work through it together we're learning on the fly!! He's open to the info I give him from the links to articles I get off of the web and this forum...at least he says he reads them...
Does help when they can read!!!!
lol
yes I understand , I have tapered from 5 to 1 over a 2 month period
One of the lucky one's!!! Excellent for you and lets hope your done with this PMR stuff...now you know though and keep a stash of prednisone handy just in case...
I do have that stash and also an on going prescription
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