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
yes, it sounds like the beginnings of a flare. i would go back to 4 mg for awhile and try again. and i would reduce to 3 1/2 mg., not 3 the next time. going from 4 straight to 3 is 25% reduction, a big leap. some people even go to 3 3/4 mg., but im not that good a pill cutter.
sometimes my blood markers are ok when I have pain..
I would go back to 4mg fir a month at least and THEN SEE IF YOU CAN GO TO 3,5 mg or 3mg…
I too have had that problem, I have GCA for 18 months the rheumatologist suggested 4mg one day 3mg the next for 1 month, then 3mg and 2mg again alternate days. I am in the third week of 4mmg and 3mg and so far so good. I was also told that the joint pain was most probably OA. I am unsure how you tell the difference.
Jennyrose, try to listen to your body. If you have any PMR pain don’t reduce, the pain is from inflammation which you must control and that is what the Prednisone is doing controlling the inflammation. When tapering use the DSNS method and a small reduction, you will take less Pred with far less discomfort. Good luck and remember it not a race and you know your body better than any doctor. 
As others have said, it’s best if you go back up to 4 mg and get rid of the pain. If it were just minor pain sometimes it’s a matter of the body adjusting to the lower dose and then the minor pain subsides. If you’ve been hurting for quite a while with this new reduction, don’t be surprised if you need to increase to quite a bit more than 4 mg to get rid of the pain.
The big item that we all are taught here on the forum is to never reduce more than 10% at a time. In your case, that’d be .4 mg, so I would say when you are ready to try reducing again to go from 4 to 3.5. However, first you need to knock down the pain and inflammation with a higher dose. It may be a while before you want to take another shot at reducing the dose.
You are the one that’s hurting - not the doctor. It may not be a flare but pushing on with the reduction to 3 mg is likely only going to make it worse for you. Also, you are now at such a low dose that I’d be in no rush at all. If it were me, I’d be fine taking 4 mg the rest of my life if it kept me pain free. At that low a dose the negatives from Prednisone are virtually none. Take care and best wishes.
thank you for your reply i think that it is a flair as i have pain in the lower part of my legs now as well. i take a split dose so i will increase the dose this evening. I am not very good at cutting pills either
Hi. I so wish that my blood level was up and then i would have the support of my doctor, he says that i definitely haven’t got any inflammation in my body as the blood tests are never wrong
Hi. what is OA ? thank you
Hi. i think that i might take 10mg for a few days , i think that i can take the higher dose for a week and then drop back to 4mg, i am really not sure if i should do that or not as my doctor said that the blood test was normal so i should carry on with what i am doing , he does not want me to increase my med . many thanks for your reply it has helped a lot
Hi. Thank you for your reply. I think that i am going to increase my pred for a few days and see if the pain will go, Then i will stay on the 4 mg for a while .
osteoarthritis
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.
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
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!
Rubbish - my blood markers were never raised out of the normal range. It happens in about 1 in 5 patients generally and more as long as they are taking pred.
PS - find another doctor who treats the patient and their symptoms, not the lab results.
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
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
thank you for your reply. I was really surprised by my doctor , he is usually so good. i am back to four mg a day now and plan to stay on this dose for quite a few weeks, i have taken on board what everyone has said so when i go down i will go to 3 1/2 mg on the slow method and hopefully wont have another flair