Tapering down from 4 mg of pred to 3 mg
Posted , 14 users are following.
Hi. I started tapering from 4mg to 3 mg on the slow method 3 weeks a go and i have started to get really stiff after sitting , my legs are really painfull. I have had a blood test and that is normal so my doctor has told me that it is not a flair and to carry on , i just wanted opinions please what would other people do, go back up to 4 mg for a while my doctor told me this morning to carry on tapering down to the 3 mg . Many thanks
0 likes, 24 replies
susan91476 Royall
Posted
Listen to the very good advice from each of these earlier replies. I have had PMR for almost 5 years, and I listened very carefully to what my doctor said - thereby, continuing to decrease 1 mg about every three months, even though blood markers did not indicate a jump - but they did start creeping up a bit at a time - doctor thought that was nothing to worry about, etc. - I am now in the middle of a flare and it is my own fault - as many have said to you, you know your body better than the doctor does, one size does not fit all, and you will surely avoid my mistakes by listening to you. Good luck.
Royall susan91476
Posted
Hi Susan. It is so difficult when your doctor wants you to carry on regardless . but i have taken on board what everyone has said so on Friday i took a split dose of 10 mg and this morning that awful stiffness is so much better, i intend to take a split dose today as well. I am not sure how long i need to take the higher dose before i can drop back to 4mg i know i can only take the higher dose for up to one week. I hope that you will start to feel better soon what a roller coaster of a ride we have with this illness. I wish you all the luck in the world Susan
Michdonn Royall
Posted
Jennyrose, I have post my tale of Woe, many times, my Rheumy rushed me right into a terrible flare. Since then I have learned to listen to my body and I control how much Pred I take, my Rheumy provides the prescription that is all. I have been very active and mostly PMR pain free. I firmly believe you must control the situation if your doctor is not getting you PMR pain free. Good luck 🙂
EileenH Royall
Posted
Your doctor is probably wrong. Blood markers often lag behind inflammation developing when patients are on pred for some reason. The pred is enough to prevent the liver producing the proteins that give those indirect markers - and that effect has been seen to continue for up to 6 months!
EileenH
Posted
PS - find another doctor who treats the patient and their symptoms, not the lab results.
Michdonn Royall
Posted
Jennyrose, your doctor does not know your body! You do! I would never taper from 4 to 3, 4 to 3.5 is what I did using DSNS, currently tapering from 3.5 to 3 using DSNS, so far doing fine. Good luck 🙂
Anhaga Royall
Posted
At this level your doctor should be very pleased with you, not inadvertently (I hope) sabotaging your progress. Doctors sometimes seem incapable of understanding that your markers are normal because pred is doing its job, not because you're better!
Michdonn Anhaga
Posted
Once again it is the GOD complex, they can do or say NO WRONG! Ask a question about the judgements they are ready to cancel you a patient!