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Prednisone Taper Help/Question

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Posted 2/16/2009 1:15 PM (GMT 0)
I have been on prednisone constantly for a year and a half now.  I have been maintaining 10mg for 3 months along with Imuran and i have been feeling pretty good (i would say 90%).  However, the prednisone is really starting to take it's toll on me mentally and i really want to get off of it (my doctor was going to start weaning me off again after i had my follow up in April).  Is it ok to just start now or should i wait?  I had thought it would be ok to try on my own so last week i went down to 9mg thinking 1mg would not make a difference, but it has...my symptoms are slowly reappearing and i have not felt well all week.  I am crampy, looser and more frequent bowel movements, off and on nausea, hot flashes, joint pain/aches....is this all in my head or can my body be THAT sensitive to the change???  I dont' know if i should continue on the 9mg or just go back up to 10mg and stay there until see my doctor in April as planned?  Or is this just a normal feeling of 'weaning' after being on prednisone for so long and it will pass as my body gets used to the lower doses?  Any advice/help would be great!

Thanks!

-Erin

Posted 2/16/2009 4:44 PM (GMT 0)
you can be that sensitive. I was on prednisone for a year once. I had to wean by .5 mg every 2 weeks and each cut my symptoms would come back for a few days...plus i felt absolutley flu like. but after about 7 days i would kinda get back to normal. its not all in your head and it is indeed the steroids. you are going to have to cut the steroids as quickly as your body allows it.. and do not cut it until you feel mostly back to normal for a few days... thats your cue as to when to cut again.  make sure you drink plenty of gatorade and take a multivitamin as im sure as you cut your electrolytes might be a bit out of whack.

Vin
Posted 2/16/2009 4:49 PM (GMT 0)
hi Erin- i am having a heck of a time also...i was on pred for a while 60...50...40...etc...2 weeks at a time until i was done...symptoms came back fast so doc suggested a short course...60...50...40...1 week at a time...at 1st i felt great, but as soon as i dropped to 50 things rapidly declined for me...now i'm back at 60 tl Tues when we chat again...not sure ehy this time is different with the pred...doesn't seem ot be working so well.
Posted 2/16/2009 5:20 PM (GMT 0)
Thank you both for your replies, this is so frustrating trying to get off of this drug...I am really hoping the Imuran will help with it, but if not my doctor is talking the Remicade route where i do seem to be so dependent on the pred...i hate this drug with a passion!!! I think i will try dropping the .5 mg like you suggested and see how that goes..mtgman...hang in there, we will get off of this drug!
Posted 2/16/2009 5:46 PM (GMT 0)
:) can't wait!!!!
Posted 2/17/2009 3:11 AM (GMT 0)
     Erin...you mean to tell me your doctor has you on prednisone and is only seeing you once a year????  My GI doctor schedules me every three months when I am in remission and EVERY month when in a flare.  He would never keep me on prednisone that long without seeing me often and having me tapering.  I am on 6MP too.  It takes anywhere from 3 to 6 months for the 6MP to "kick in" along with the prednisone.
Posted 2/17/2009 3:17 AM (GMT 0)
I'm on Imuran, and today I took my last 5mgs of pred ^_^. I did go a little up and down with more frequent bowel movements but not enough for me to think I had to stop. So just wait till you feel normal and then see if another decrease makes it worse than you think you can handle. Hope the Imuran works as well for you as it has for me
Posted 2/18/2009 12:52 AM (GMT 0)
Hi Christine,
No my doctor is great, he sees me every 3 months as well, i am just inbetween at the moment. He also has done a lot of preventative tests where i have been on the prednisone so long (bone scan, blood work every month for the imuran, cataract check every 6 months, etc). He had wanted me to wait until April to start my taper, but my mental status is pushing me to start now (extreme depression which is starting to get to my family) so i figured i may as well try again (i have my 1mg pills from before). the 6MP made me sick and was causing my liver to shut down but the Imuran seems to be doing well with my system and so far i have not had any side effects which is nice.

Mythmoon, Congrats on the last dose of pred!!! you must be so happy! I can't wait for that day to come! I am going to stick to the 9mg for another week and see how i do..i do feel a bit better today so we shall see!

Thank you so much for your advice!
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