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Need some steroid taper advice asap.

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Posted 3/18/2011 9:19 PM (GMT 0)
Hi--

I haven't been around much, been feeling pretty crappy, 2new dx AI Hep 1 overlap PBC and am waiting to see the GI.  Meantime, my whole body broke out in a raised flat red rash and I had to go to ER, was from liver disease.  Got steroid shot in IV for the night and a really crappy taper:

1 10mg pred 4x for one day

1 10mg pred 3x for one day

1 10mg pred 2x for one day

1 10 mg pred 1x for one day

Now I crash and go into addisonian crisis on a much longer taper than this.  And I'm also having electrolyte management problems as part of the liver getting worse (or kidneys). 

I was told that if I started to crash (because I tried to warn them) to take the 5mgs from my rheumatologist.  His normal taper for me is a month long starting with 40mg and going down by 5mg every four days.  I am supposed to try to correct how I feel now.  I am down to 5mg twice yesterday and was okay, but when I took 5mg this morning, it wasn't enough and I fell asleep and felt ill. I'm thinking I need to go up a little and come back down, like 15mg (up to three 5mg for a few days, then two then one, then maybe a half (sometimes he writes for that).  Does anyone here have to do this themselves?  Is it the length of days you take a steady dose that makes the taper smoother or the way it goes down.  One day then change seems like a pretty hard taper, how would your body have any time to adjust?

 I can't do dose packs  anymore by the way, I told them that.  So she writes for a dose pack.  My disease comes back harder and then the steroids don't work as well. and I end up on Iv electrolytes.  I know you can't advise, but any wisdom here, personal experiences, might help me shed light on my own situation.  It may just be a really rough come down.  I'm scared that the first bout was a warning of my liver not managing things, or lupus.

Thanks for any help you can give and I hope this post finds you all doing well.

 

Posted 3/18/2011 9:37 PM (GMT 0)
Greetings - I'm sorry you are having such a difficult time. My own experience with
prednisone over the years boils down to this: It is okay to start at a high dose (I'm sure
you already know this). Obviously going down is a different story but the most I've been
advised is okay to taper is 5mg at a time. One of my rheumys had me go down by
2.5mg increments ex: 20mg to 17.5mg to 15mg over a 3 week time frame. Currently
my nephrologist has me taking 10mg every other day which actually surprised me.
Several times over the years I have increased on my own to feel better. I see nothing
wrong with it until you find the dose that works for you. I hope you feel better soon.
Posted 3/18/2011 10:33 PM (GMT 0)
I have at times cut them in 1/2 to get the 2.5 . Listen to your body is my best advice. you know going down or off prendisone can be really hard, if you need sleep, its ok, sleep! : ) Anyway, I agree with anna, it sounds like you kinda know what works and doesn't work for you.

Hope you are feeling better soon
Posted 3/19/2011 12:26 AM (GMT 0)
Whatever you do, NEVER go down faster than the dr says. This can be life threatening! (Read: Heart Stopping)

Changing daily or every couple of days will really throw your system out of wack and can permanently damage your natural production of pred. (Naturally our adrenal glands do 5-8 mg per day)

Change & stay there for a week. Go down 2.5 - 5 for a week, if okay do a week at the next step down. Once you get under 10mg/day, step down by 1 mg per week. This long drawn-out method is MUCH safer for your body overall, and can help get your adrenals slowly back into the practice of doing their part.
Posted 3/19/2011 12:39 AM (GMT 0)
Thank you. I am giong to have to try to take more, I can't go down like this. I hate having to deal with the er on this. They can only do so much. I've got to get in to the doctor. I feel like everything is falling apart. On top of it, my bladder is vibrating now, spasms, really irritating.

Thank you again for some encouragement. Its scary. This came on suddenly, for 18 years been pretty stable with just a few minor episodes, what is happening now is much worse. The pbc is a new emergence of ai disease and it is really wrecking me. Kidneys not so hot and endocrine either.

Take care and thank you again. I really needed help. you guys are angels.
Posted 3/19/2011 10:18 AM (GMT 0)

Hi!

Hope you feel better, soonest. I agree that you must listen to YOUR body, and as I have learned, and both my pcp and rheumy have had to lecture me about........ tapering down SLOWLY, VERY, VERY slowly, from high dose pred, (40mg for me), is absolutely necessary. And may just prevent or delay a relapse. Recently my rheumy explained to me that every other day maintenance dosing is being shown to be best. From what I have read, taking the prednisone every other day seems to let your immune system battle off infecions better. I am down to 20mg every day for 3 weeks, then 15 etc. My drs. give me 20mg and 5 mg tabs. and if I think a 1mg tab might help, my rheumy will call it in. When I finally get my dose down, then I will try the every other day deal. Unfortunataly, by then it's gonna be time to crash again, and start all over.

hugs,

suetoo

Posted 3/19/2011 9:35 PM (GMT 0)
I am figuring out prednisone tapers right now as well. I agree with what Lynnwood and suetoo said - slower is better. I am coming down from 40mg x 1 week, then 20mg for a week and a half, and now (because I asked my doctor to do it like this) am going down 1-2mg per week and using how I feel as a guide to tell whether I'm doing it right or not.


Kathryn
Posted 3/20/2011 4:16 PM (GMT 0)
Thanks Lynnwood, and everyone! Lynnwood, that was exactly the info I needed to know. And it makes sense. I know I can't take dose packs, just didn't know why. All my rheumie said was that it was too short a taper, I didn't really get it. I thought it had to do with the disease, not adrenals. He tried me on a lower dose month long taper, and it was miserable. So I guess I need a high dose these days. I suppose everyone is different is this regard.

I thought the way the ER doc wrote it, well knew the way she wrote it, was gonna be a problem. She gave me ten 10mg prednisone pills for the entire thing and four I had to take the first day, 4,3, 2, 1, changing the amount every day! I didn't have too much trouble (probably because she also gave me a shot of iv solumedrol in the er, for the first two days, but then wammo. I had 5mg, so I just took three 5mg for a day, then now down to two 5mg, and today feel good so far and haven't had any yet so that is positive, will take my two for a couple more days, go down to two halves for a few then off, then hopefully off. No replacement for the good rheumie. I don't like anyone giving me pred but him.

Thanks again so much.
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