Living with some pain and less Prednisone. Good idea?

Hi I also was diagnosed with Pmr start at 15 pred. mg down. To 10 mg and just start  with actermer on my third shot.   I am still taking  10 mg of pred.  I am 54 years old and I feel better if I work out in the morning.   It's crazy. Cause I spinn and  it works. I feel so much better after  take the class.   I can't walk real good in the am. But I sure can spinn!!!!!ihope this actermer works.  So I can. Get off the pred.   I keep you posted.    If this is the drug that will work. ,,,, mj

Oh fir the  fatigue. I got can

Very few are free of pain completely. There is always some, but it is important to monitor if it is stable or is it increasing.  If there is any change in pain level to worse, then maybe your reduction was too quick, too soon. Keep in mind that Pred does not cure PMR, only manages inflammation.  There is no virtue in taking less pred that you need to "wash away" the inflammation. If you let the inflammation build up, you will eventually have to increase pred, and if you wait too long, flair will set you back to a dose that might be as high as starting dose ( and sometimes even higher).  So be vary careful and LISTEN to your body.

If you went from 15 mg to 7 mg in seven months, my experience is that is too fast a reduction. I believe 1 mg a month is the fastest you should try and from 5 mg to zero you need to reduce even slower not more than 1/2 mg per month. Usually if you have pain you are not taking enough prednisone. The fatigue is something that I always have to deal with and I am not sure if it is a pmr symptom or a side effect of prednisone. I sleep a lot at night and I take a nap in the afternoon. The good news is pmr will eventually go away and you will get energy back. I am 78 years old and on my second battle with pmr.

 

I've already posted thi to your comment on the other thread so I will repeat it here:

Few people a totally pain-free but whatever the level of pain you had left over with the starting dose is your guideline - you are only ever looking for the lowest dose that achieves that. You reduce in small steps until you find they are starting to return and then immediately go back to the last dose that worked well. You are taking the pred to manage the inflammation and, therefore, the symptoms until the underlying cause, an autoimmune disorder, burns out and goes into remission. That is usually anything between 2 and 6 years for 75% of patients but you can't tell in advance how long it will be for you.

Reducing "because of the pred side effects" is not the way to look at it. The pred is the only thing that will relieve your pain and if you do not take enough the symptoms will return just as they were at the start. Most of the pred side effects can be managed if you know how, some you just have to accept. Or you accept the return of the pain and live with it.

But basically - no, it isn't a good idea to accept a greater level of pain and just keep reducing. The pred has cured nothing, nothing will cure PMR. You can accept the side effects - which will reduce with time as your body gets more used to the pred/reduce and some can be managed when you know how - or you can say no, take too little pred and eventually the dripping tap of inflammation will fill the bucket again and you will have a flare and be back to where you were originally.

The fatigue is part of the underlying cause of the PMR, and autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks your tissues as if they were foreign invaders, like viruses in flu. That is what makes you feel as if you have flu and so fatigued. That has to be managed by you, the pred doesn't help there, and you havee to learn to pace and rest appropriately. 

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

These may help, especially the second one. Also google "Gorilla in the house by batsgirl" and "the spoon theory by Christina Miseriando" for allegories about living with chronic illness.

I found fatigue a real problem at 7 mg and below. It does gradually get better, but you have to accept the need for rest and stress avoidance. Don't accept any more than minor niggles, and if they get worse stop tapering and maybe even increase dose for a while. It just means you've reached your lowest effective dose and will have to wait a while before trying a new taper.