Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group can't get below 10mg of prednisone

OK me again!

The dr has me on prednisone until the remicade can't start working. Well I keep trying to get to 5mg and I just can't. I start swelling and getting stiff. My back flares up horribly. I just feel horrible. She is away until the 9th, and her assistant told me to stay up at 10mg, but I've been on it for a month now. I worry about getting too used to it. I was only off it for a few weeks before I had to go back on it. So I've been on it more then off over the last three months or so.

I really want to get off it, but how? Even cutting pills doesn't help. It has to be 10mg or my body goes nuts!

Any suggestions?

How do you try reducing? I think it was Possi that helped me understand that it has to be so slow that your body doesn't notice. You could try going to 9mg, that's one 5mg pill and 4 1mg pills (you can't do this without the 1mg pills - I tried the cutting in half stuf - didn't work). If that's okay then you stay at that level for even a month if necessary.

If nothing works, then don't panic - stay on 10mg for a few months until the remicade kicks in. There are long term risks but I think a few months isn't too serious.

Hi,
You have the right idea, you can do this. You will have the time go get off the stuff. Try what Wendy said. Your body just needs to get used to the idea of making it for you.
Nice and slow girl.

I needed 10mg a day for years - but something that helped out eventually was doing 20mg every SECOND day, and then reducing from there. The every-other-day off the prednisone theoretically causes your adrenal glands to have to kick in and do a little bit of work. Not a sure fix, but maybe it would help to cut down a little more? Also, they do make 1mg prednisone, to help taper off - not sure if you can get hold of any if your doc is away though.
Hang in there...

I'll call about the 1mg pills and see if that works better. I've done the taper about 4 times now and have never had this problem. I got down to 5mg a day for a week and felt great but forgot one pill and man I couldn't move! It was only 6 hours late too! Then back up to 10 to calm it down. I tried again to taper and again had to go back up to 10. I hope since I have an Rx for 5mg the assistant can just call in 1mg too.

Today is day three of the 5mg and I felt ok until today. Now I'm not doing too well again. I really don't want to have to go back up. But we'll see what the dr says.

Thanks everyone. I just hate being on this drug! I've gained ten pounds this month due to it! Plus my poor belly is swollen from it.

I'm very strict about not missing doses - I did it once and paid horribly for it. I split the dose between morning and evening, so I take 5 mg in the morning and then the rest in the early evening. I'm on 6 mg right now so I'm taking 5 mg in the morning and 1 mg later.

Yes, you have to do it very very slowly. Go down to 9 mg. and even if you have to, alternate 10 one day and 9 the next for a week and then go to 9 every day. Don't go down another mg. until you are sure your body has adjusted to this drop and then do the same thing at 8 mg.

I am at 6 mg. and my rheumie told me to stop and not drop any more. If you have been on it very long you need a test to be sure that your body has started making it's own cortisol. I kind of have a feeling that I am going to stay on this low dose. I don't have any side effects at this level but really tell when I cut it.

My dr. puts me on high dose tapers for when I want to travel or do something but I come off of them pretty quickly back to my 6 mg.

He asked me why I wanted completely off so badly. I told him I want off of all meds. He told me that I just do better with a little extra help and I agree.

I have come off of it several times when I had been on it multiple years but now it has been a long time and I think I will stop here.

You can do it from the dosage you are on. Just don't get in a hurry. My rheumie gives me 2 scripts all of the time, for 5 mg. and for 1 mg. so we can adjust when we need to.

Best wishes.
Possi

i've been on 10mg a day for about 2 months and wow it has worked untill yesterday now back is killing me and i've got the [**BLEEP**] nodular episcrlitls in my eye which is painful and very red i won't miss it again. right now i hope doc don't take me off of it. it sure is nice not having the pain not being able to move in the morning. sure hope you get some relief.