Prednisone Taper Help/Question

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ErinD
Regular Member


Date Joined Jul 2008
Total Posts : 94
   Posted 2/16/2009 7:15 AM (GMT -6)   
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
First Diagnosed with Microscopic Colitis 10/07
Diagnosed with UC instead 3/2008
10mg Prednisone
50mg Imuran
75mg 6-MP
Calcium + Vit D
Probiotics
Entocort 9mg daily
800mg Asacol 3X daily
Bentyl
Lomotil
Dicyclomine
Prevacid
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/16/2009 10:44 AM (GMT -6)   
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


History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now *In Hospital* |Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 50 mg|6mp 75 mg|lialda 4.8 mg|Cipro/Flagyl|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|
 
 
 
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/16/2009 10:49 AM (GMT -6)   
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.

ErinD
Regular Member


Date Joined Jul 2008
Total Posts : 94
   Posted 2/16/2009 11:20 AM (GMT -6)   
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!
First Diagnosed with Microscopic Colitis 10/07
Diagnosed with UC instead 3/2008
10mg Prednisone
50mg Imuran
75mg 6-MP
Calcium + Vit D
Probiotics
Entocort 9mg daily
800mg Asacol 3X daily
Bentyl
Lomotil
Dicyclomine
Prevacid
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/16/2009 11:46 AM (GMT -6)   
:) can't wait!!!!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 2/16/2009 9:11 PM (GMT -6)   
     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.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 2/16/2009 9:17 PM (GMT -6)   
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
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 5 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine. Also now trying probiotics Bio-K (acidophilus)


ErinD
Regular Member


Date Joined Jul 2008
Total Posts : 94
   Posted 2/17/2009 6:52 PM (GMT -6)   
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!
First Diagnosed with Microscopic Colitis 10/07
Diagnosed with UC instead 3/2008
10mg Prednisone
50mg Imuran
75mg 6-MP
Calcium + Vit D
Probiotics
Entocort 9mg daily
800mg Asacol 3X daily
Bentyl
Lomotil
Dicyclomine
Prevacid
 

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