I have been on 9mg for a couple of months. I started with 20mg and then 15mg and then reduced further on advice from my doctor. He has told me to reduce 1mg per month. When I do reduce I have pains round my hips and I am very tired. Do I still continue and hope it will feel better after a few days? I don't know whether to stay on 9mg or try 8mg again.
Are you using the DSNS method of reducing. I am on 9mg and am going to use this method to get to 8mg. If I get to 8 without any problems I will then only reduce by half mg still using the DSNS method. This is the best way of avoiding pred withdrawal and catching a flare before it gets hold.
Good luck
I was able to reduce quite quickly from 15 (my start) to 10, but 9 was a step too far. At that point pain began to increase over the days so I went back to 10 for a couple or three weeks and from then on used the dead slow nearly stop taper plan. I did show it to my doctor first and she approved it, but I would have used it anyway. I was able to taper to as low as 3 mg by the end of my first year, but have been mostly at 2.5-1.5 the past couple of years, so appear to have reached my lowest effective dose for the time being. I am sure that had I continued to taper relentlessly I would have flared and ended up taking far more pred and probably unable to get as low as I did. So speed is not a good idea at this stage.
If you have any return of symptoms of PMR YOU DO NOT REDUCE ANY FURTHER. Sorry to shout but it is really important.
The freedom from symptoms you achieved at the starting dose is your guide - at the end of any taper you shouldn't feel any worse than you did at the start.
The only exception is when you develop pain that starts as soon as you drop to the new dose and which improves over the following few days - that is most likely to be steroid withdrawal pain and it is because your body has to get used to the new dose.
Often dropping 1mg at a time from every day old dose to every day new dose overnight is too much and then slowing it down as described here:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
will make it easier - other slow reductions approaches are available!
You are never reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as the starting dose. Treatment with pred for PMR lasts at least 2 years but an average of 5.9 years so there is no hurry, it isn't a race. The pred hasn't cured anything - it is managing the inflammation caused by an underlying autoimmune disorder that gives rise to the symptoms we call PMR - it isn't the disease itself. That is chugging along in the background for as long as it feels like it and nothing we can do will influence that. For 1 in 5 patients it will burn out in 2 years or so but they seem to be at a higher risk of having a relapse at some later point. For 5% of patients PMR lasts a very long time, sometimes for life, but the majority are able to get off pred in up to 6 years.
Thank you so much, Eileen. This has been so helpful. I wondered what the dead-slow etc was. I did wonder as well whether it was steroid withdrawal or PMR.
I shall follow the dead slow method.
I wasn't following DSNS method but shall now. Thank you Kate.
Thank you Anhaga. I shall follow the dead slow nearly stop taper plan. I didn't know about this but I have been sent the details. Thank you.
Ann, we are all different and each case is different, but from my experience on this PMR Journey and after following my Rheumy direction into and VERY BAD flare increase from 7 mg to 30 to get relief. I now listen to my body, never reduce if I have any PMR pain. Follow the DSNS protoco and never reduce my more than 10 %. Under 10mg I reduce by 1/2 mg and may take me more like 2 months, but I am PMR pain free. Good luck on your journey, try to stay active, positive and smile, I believe the smile helps. ☺️