Finally getting off prednisone

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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/7/2007 8:12 AM (GMT -7)   
Hi Everyone.............well the tapering seems to be going ok so far.  Just started the 2 1/2 mg and soon to be ZERO. (He is having some of the usual "withdrawal" side effects but nothing debilitating)  At the last Mayo Clinic appt the Dr was pleased with the lab results and tolerance of the 150 mg from 75 on the Imuran.  We go back in 6 months....yippee!!! (The 5 1/2 - 6 hr round trip drive is a pain but necessary.)  Monthly blood work, Dr monitors then faxes a prescription for another month of imuran and this will go on for a year.  Local monthly appts still with the local GI monitoring and following the lead of the Mayo Team.
 
I guess overall the important thing is on a scale of 1-10 I would say his quality of life is an 8 from the zero it was when he was in the lowest of lows.  Everything is leading to and pointing to a remission.  Of course the Dr's goals after the prednisone is to work on the pain meds that he still needs or he would not be as functional as he is.  Then after that possibly trying to lower the asacol dose and way down the road maybe lowering the imuran and finding what dosages are good for maintenance.  He stressed that it is a very slow process and takes time and a lot of patience.  The Dr reassured us not to dwell too much on the drug imuran itself and all the warnings....he told us it really is a safe drug in the treatment of this if you respond to it and that is why he insists on monthly labs to monitor and pay close attention.  So that being said it put us at ease a bit.
 
Of course he is tired of all the meds but they are what is making the difference. Also listening to the voice of experience here on the board we will NEVER make the mistake when he is in remission and back to feeling NORMAL to stop them.  Whatever is needed to maintain is what he will have to live with.
 
He still has issues from time to time and has better days than others but has come such a long way from that hospital admission and has accepted the fact that this is how it is.  As I have said before "when you have been to hell and back" this is tolerable in the grand scheme of things. 
 
For those of you still having a real tough time and trying to find the right meds and dosages to get you to a functional state hang in there and don't give up.  The trial and error aspect of this is the real tough part.  I just wanted to post to give an update and maybe some hope for those of you who might need it at this time.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 2 1/2 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enemas AM & PM, folic acid 1mg, Fosamax 1x month


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 12/7/2007 8:44 AM (GMT -7)   
How come he had to go all the way to the Mayo clinic to be put on Imuran?
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 12/7/2007 12:45 PM (GMT -7)   
WooHoo!! It's been a long haul.
Keep us posted as to how it goes. 
 
quincy
 
 
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/7/2007 8:08 PM (GMT -7)   
No Harpo -- he was already on the imuran when we first went to Mayo  in October.  Mayo increased it  from the 75mg low dose that his local GI put him on - she purposely started him on the lower end of things and they doubled it.  Having been on it for 4 months or so, various lab results, prometheus results and the fact that he was showing signs of tolerating it with no problem they put him up to 150 and not the 200mg he could have been put up to.  Should the local Dr have started him at 150 immediately???  Probably, but she told us from the start that she preferred to begin this particular medication more conservatively.
 
(6 weeks after the imuran  was started he was able to do things and go places he hadn't been able to do previously - limited, but nonetheless not a recluse any longer either.)
 
Our local GI suggested to us that she wanted to send a referral to them when he was first hospitalized in mid May as he had such a stubborn case. She was doing everything by the book but really had his best interest uppermost in her mind. The Mayo has a great reputation, on the cutting edge of things yadda yadda and she wanted to be sure she wasn't missing anything since she is in a smaller practice and felt she was running out of options for him. (How nice to have an honest Dr without a huge ego and she is so totally honest and has a great bedside manner.  We really have a great relationship with her.)  Our insurance covers it and we really were at the point that a second opinion was something we thought would be a good idea.
 
By the time the Mayo appt came in Oct  he was on his way to being so much more functional.  The additional care, few changes to some meds,  additional tests, the GI doctor there and  colo rectal surgeon also came up with some other suggestions to incorporate into his care.  We had and have faith in our local doctor but if we had not gone to Mayo I'm not so sure that he would have progressed to the point where he is now.  And maybe he would have.
 
So -- even though it is having two doctors for the same thing more or less....we are now at the point we will continue with local care and see the Mayo Clinic every 6 months.  Both Dr's are communicating with each other also.
 
Around the time he was hospitalized and I found this Healing Well Forum,  all the info, advice and hours of reading posts on this board made me so well informed that I was so well prepared and became quite the advocate on his behalf.  I only wish I found this place 6 months earlier and maybe he would have avoided hitting rock bottom with that intolerable flare.  But that's history now and we are just so grateful for this reprieve. 
 
 Hopefully he will attain a full remission and be lucky to have it last for a good while.  The Dr's are pleased and feel things are going the way they should.  Hopefully they are right.
 
Since there are no guarantees with this - we are going to enjoy what we can and hope it continues.
 
I know I could have responded with a one or two sentence response but I take the time to go into detail and depth just in case there is something here and there I might say that might help someone out there.
 
 

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 2 1/2 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 12/7/2007 9:37 PM (GMT -7)   
Glad to hear he's continuing to improve! I live only an hour and 15 minutes from the Mayo Clinic in Rochester and am thinking of going to a GI there at some point. I like my current GI, but he doesn't specialize in IBD and doesn't seem to be completely up-to-speed with everything UC-related.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - as needed for flares
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D) for Osteopenia; flaxseed


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/8/2007 4:16 AM (GMT -7)   
Hopefully Sara your current Dr won't mind (he shouldn't) if you want to add the Mayo in your care regimine. Different doctors have different training and philosophies. The bottom line it is your health and well being at stake here and hopefully your current GI will welcome the additional care.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 2 1/2 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 12/8/2007 9:13 PM (GMT -7)   
It's great to hear that your husband is doing so well and that the doctors are communicating well. May it all continue!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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