Posted , 8 users are following.
HI,
I have been managing minor pain after being off Prednisone for a few months with Ibuprofin and Advil.
The pain is slowly getting worse.
My question is at what point do I return to Prednisone or should I tough it out?
Thank you,
Carol
0 likes, 13 replies
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ptolemy carol99984
Posted
If Ibuprofen and Advil are not working as a pain killer it is quite likely it is the PMR raising its ugly head again. Don't try and tough it out PMR will win.
shelagh1952 ptolemy
Posted
You should go back to your doctors for advise as if going back on steroids your need an idea of the correct dosage and to have your bloods inflammation levels checked.
carol99984 ptolemy
Posted
They do work but I seem to need more and more.
Thank you.
carol99984 shelagh1952
Posted
Thank you! I will.
Anhaga carol99984
Posted
How long did you take prednisone and how did you taper before? Were you completely free of symptoms when you stopped? Many people are encouraged by their doctor to taper too quickly or stop too soon and this leads to a flare. Even my otherwise very sensible doctor told me well over two years ago when I got to 1 mg to finish up my tablets, then "stop and see what happens". What happened, even though I had enough tablets to attempt a slow taper to zero, was a flare, my only real flare in what is now getting close to five years of treatment. The last two years I've hovered around the 2.5-2 mg mark, that appearing to be my lowest best dose to control PMR symptoms and only recently have I got to .5 mg, but still not sure if I'm in remission or actually needing this dose for a while longer. I don't feel secure enough yet to try the next taper, which would be to take about three months to get to zero.
3party Anhaga
Posted
How do you taper from 0.5 to 0.0 over three months? Is it made in such tiny doses?
EileenH 3party
Posted
No, but you don't have to take the same dose every day at that stage (or any stage if it comes to that).
The DSNS approach
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
was worked out to allow for reducing slowly with any size step down.
You can get a pill cutter to make 1/2mg doses from plain non-coated pred tablets - accuracy doesn't matter too much - and then you miss a dose on one day, take the 1/2mg for several days, miss a dose, take the 1/2mg for several days and so on, reducing the time between the no dose days by one day. Sometimes you may need to repeat a step such as 1 day no dose, 5 days 1/2mg dose a few times before proceeding to 1 day no dose and 4 days 1/2mg dose to spread the change out further.
By going so slowly you are more likely to see if you get to a stage where the pred isn't enough.
Anhaga 3party
Posted
I use the (six day start version of the) Dead Slow Nearly Stop plan, but tweak it by doing each step twice. Short version of DSNS takes a month, longer version takes six weeks if you follow it exactly. I found I had to stretch out the time once I got down to these vanishingly small doses. I must be super sensitive to pred, which might help explain why it was so easy for me to taper the first year from 15 to 3, although everyone kept telling me I was too fast!
Anhaga
Posted
I should have explained that when I'm ready for this step I will treat zero as my "new dose". Also my doctor told me right at the beginning that she had patients who for a while kept a supply of 1 mg tablets on hand in case they needed the occasional dose, so possibly neither PMR not pred are done with me yet. But I'm a poster child for successfully using a very slow approach and even though needing pred apparently for the median time of between 5 and 6 years almost all of that time has been below 3 mg.
3party carol99984
Posted
At what dose would you be returning to prednisone? Do you find the ibuprofen just as effective? What dose? How often?
3party carol99984
Posted
At what dose would you be returning to prednisone? Do you find the ibuprofen just as effective? What dose? How often?
EileenH carol99984
Posted
If this is returning PMR - and it sounds a quite typical story: stop pred and within a few months the symptoms start to creep up again - then toughing it out will result in only one thing: a return to the state you were in originally.
You need to see your doctor - low dose pred has far fewer adverse effects than increasing doses of ibuprofen (Advil is the same stuff, just the brand name so be careful you aren't overdosing). NSAIDs are harsh on the body - especially the stomach and, in the long term, the cardiovascular system.
carol99984
Posted
Thank you everyone for your suggestions. I hope I haven't waited too long before seeing my doctor.
I definitely will try the DSNS approach!