Trying to reduce Prednisolone, but feeling miserable

Hi Liz - 

I’m in the same boat. I’ve been on prednisone for 2 years and can’t get below 10mg without multiple issues reappearing. 

Seems to be something mysterious about that number for many of us. I’ll keep persevering and I’m certain one day  something will happen to make it possible. 

Good luck !

Hi Liz, I've been on prednisone for 15 months and I had a heck of a time getting below 10 mg too. I was stuck on 10 mg for well over 6 months, I even had to increase to 12 mg at one point and start again decreasing to 11 and then 10 again. I'm finally at 9 mg. Fat, thin skined, hair falling out all the fun stuff. I think this is just part of our journey. Fortunately my doctor doesn't push me.

Sherri

I was diagnosed a year ago and I am only just trying 9mg I did get to 7 but all pain came back in neck and hips. Dr told me back to 10 for a month then 9 til I see Rheumatologist which I have waited a year for, hopefully I will get sorted then. I do hope you get sorted as well I really know how you feel.

I was diagnosed Nov 2015. After 2 years I was down to 8.5 but had a flare last Nov- went back up to 10.5. Since then going down by 1/4 mg snail method. I can tolerate this and am able to exercise and feel better. 

The rule seems to be decrease no greater than 10% over 10 mgm dosage then perhaps 1/2 mgm. If one is way below 10mgm - say 5 mgm it would seem prudent to try 1/4 mgm. I can understand the eagerness to go to 0 though.

If you are stuck at 10mg after ayear - then that is your body telling you that that is the dose it needs to manage the inflammation. You are not heading relentlessly to zero - you are looking for the lowest dose that gives the same level of relief that the starting dose did. 

It is also possible that the mood problems could be because your adrenal glands are just beginning to wake up and you are low on cortisol still. It doesn't usually become a factor until you get to about 8mg pred - but above that dose your adrenal glands go into hibernation because they aren't needed, there is enough corticosteroid present in the body for it to function OK. However - some people only absorb about half of the pred they take (it is called the bioavailability) and if you are at that end of the scale, taking 10mg means you are actually only getting5mg - less than the body needs,

What sort of size reduction steps are you using? The smaller they are the easier the body finds it to make up the deficit - there are several people on the PMR forums who can't reduce more than 1/2mg at a time even using the Dead Slow approach - and a few who have to do it 1/4 of a tablet at a time!

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

The Dead Slow approach is the first post on that page. There's other useful stuff in the third post too if you haven't seen it before.

I had a lot of trouble getting below 11 mg but at almost 2 years later I'm now down to 6 mg. I don't know why it wasn't working before and now does. I know a lot of people will say taper slowly and if you have problems taper even slower. Sometimes you just need to stay at a dose for a longer time.