Not sure how much to go back up on pred.
Posted , 6 users are following.
I had managed to reduce to 15mg. from the inicial 20mg. although not in the best of circumstances.After about a week on 15mg, I started to get some "niggles" but it was hard to tell as I am also unable to do any activity due to a broken pelvis.I went back up to 16 yesterday, but today I feel like im in a full fledged flare.
I am flying home next week on a 12 hour flight and the way feel now, even with airport assistance, I wouldn't be able to "make it".How much should I go up? And once Im back home and over the jet lag, how do I start tapering again? From square 1 , 1mg a month?
I realize this is a process and not many PMRers have a completely smooth journey but it's still quite disappointing when you have to go back up . I had programmed reminders on my phone and today it reminded me to drop to 12mg...Hahaha...
0 likes, 16 replies
daniel08939 mimi1950
Posted
I do not believe the proper dosage of prednisone is a known thing. Each patient has different experiences. My experience is when you take the proper dose your symptoms go away. If you are taking too little you will have symptoms. It is a trial and error thing but your body will tell you.
mimi1950 daniel08939
Posted
Thank you Daniel, Im confused because I felt fine at 16m so I went down to 15 when I got the flare.i went back up to 16 but the symptoms this time around at that dose don't seem to be diminishing.
Iis it better to go up milligram by milligram or go up more? And if you go up Saturday 5mg. for special circumstances, should you taper down gradually or go directly to the dose you felt good at last?
EileenH mimi1950
Posted
You can increase the dose for just a few days as much as you want and go back to where you were. Once the inflammation has built up the dose you were possibly fine at isn't enough to clear out the excess (so to speak). When do you fly?
mimi1950 EileenH
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EileenH mimi1950
Posted
Then I would go back to 20mg until you get home. As of tomorrow if you don't want to today.
mimi1950
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EileenH mimi1950
Posted
It is hard to be objective about yourself - especially when it means doing something you feel makes you a failure. You aren't - but when you get home you need some really good care. And lots of rest at last.
mimi1950 EileenH
Posted
Thank you so much. I do have an appointment with a new rheumi when I get back and I will go to the appointment with a lot more confidence armed with all the information I got on here. I feel like I don't even need a rheumi 😇 but I do need to get the periodic blood tests ,etc..My husband retired from his practice last month .
jean50664 mimi1950
Posted
So sorry to hear that you are in pain. I guess the broken pelvis isn't helping though. I try to manage, and as long as I get a decent sleep with perhaps aspirin and paracetamol.......and take longer to reduce down.
good luck !!
mimi1950 jean50664
Posted
Thank you, Jean. Yes, I was certainly underestimating the power of PMR, thinking I had it under control ..The pain from the fractures has certainly set me back in the management of my PMR, but I did learn an important lesson: not to let anyone from scaring me into tapering quicker than I can. It seems lots of docs blame prednisone for every symptom and comorbidity we have! There are diseases out there that require life long use of steroids so I really don't understand.
EileenH mimi1950
Posted
There is a fundamental truth about this journey: WE cannot control the PMR. But IT doesn't have to control US - we have to accept it is there and accommodate it but that is not giving in.
jean50664 EileenH
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EileenH jean50664
Posted
No, there is no cure, as there is not yet a cure as such for any autoimmune disorder I can think of. Even if it burns out, the potential for it to return is always there.
In 75% of patients PMR goes into remission in up to 2 to 6 years or so - but that doesn't mean it can't come back. In a small proportion of patients it may return, and a second episode may bear no resemblance to the first in any way, intensity, time, response to pred. In about 25% of us it doesn't seem to want to burn out at all - but it isn't clear if there are different sorts/causes. They don't know enough about the mechanism of the disease to work that out.
Anhaga jean50664
Posted
But, just to add, there is a whole lot we can do to improve our general health which makes the PMR more bearable, and possibly, hopefully, lessens the pred side effects. In many ways I'm healthier, both psychologically and physically, than I was before treatment. And I hope I've changed enough things for the better so that I will never be as ill as I was when PMR first hit. Thigs I've learned: choose your battles, avoid stress especially when it's something you personally can do nothing about (turn off the news), get enough rest, get outdoors as much as possible, spend time with friends and doing things you enjoy and don't let guilt (I should be doing this or that) get in your way. Life is short, dust and dishes and laundry, or workplace annoyances, are always there, but time is not on our side. Seize the day.
EileenH Anhaga
Posted
A far more eloquent summary of something I just said on the other forum - sod housework, it's a waste of the energy you can devote to something enjoyable and probably more profitable!!!!!
Anhaga EileenH
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