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Ugh, 10 mg of pred does it again

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Ulcerative Colitis
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Posted 10/27/2008 6:17 PM (GMT -5)
I swear, every time i get to 10 mg, I get hammered.   Please allow me to vent.

I

HATE

COLITIS!

And back up on the pred we go :(.

Vin

Posted 10/27/2008 7:15 PM (GMT -5)
I hear ya! I'm in the same boat, except I got down to 5mg. I've been up and down for two years now and don't wanna go back up! I'm awaiting the results of a TPMT blood test (enzyme activity) to see if I can go back on 6-MP again. The only thing with that is that it tends to lower my white count, so Remicade may be my next step. I'm nowhere near feeling like I wanna go for surgery. This whole disease has made me anemic, too, and I'm now getting iron infusions and occasionally blood transfusions. My hematologist would like to head off the blood transfusions with iron infusions, though. I don't absorb oral iron. I'm toughing it out until I hear about the TPMT results. I know upping the Pred. works, but I hate the side effects! sad
Posted 10/27/2008 7:47 PM (GMT -5)
Its definately wearing on me. I hate pred probably as much as everyone else! I am not a fan of the immunosuppressors in general, even though 6mp seemed to do the trick for me last time. I am only 4 weeks in on the 6mp so it might just need some more time to kick in. Hopefully my next taper on pred will be successful.

If not, I think I am ready to jump into the surgery bandwagon. Being sick, or being worried about being sick all the time has taken a toll on me over the years. If the 6mp does not work for me, and I can't get off pred, i will most likely skip on humira and remicade and get on with the surgery. I have no confidence in the long term ramifications of humira and remicade on colitis or the body itself. I'd rather not keep pumpin in 15-20 drugs a day and just get rid of the offending organ altogether!

Vin
Posted 10/28/2008 8:04 AM (GMT -5)
I've had three infusions of Remicade in the past month and am now tapered down to 10 mg of prednisone with (so far) no problems. I really think the Remicade works. My body won't respond to prednisone alone. I've been down that road before and I really think the Remicade made all the diffference. You guys should think about it....I know all the side effects and the immunity possibility but perhaps it could give you some peace for a while... or extended remission, hopefully. I can't say I'm into remission yet but I think I'm getting there.

I'm looking forward to going through the holidays with (hopefully) no flare.



Katie
Age 25
Diagnosed UC March 2008
Lialda 2x
Remicade
Prednisone 10 mg (tapering)
Posted 10/28/2008 8:09 AM (GMT -5)
Vin, I know the feeling. I started flaring recently at 10mg/day. Not fun after you enjoy "normal" days for a while, but hang in there brother!
Posted 10/28/2008 8:14 AM (GMT -5)
We must be on the same broken record, Vin. I've hit several prednisone reflare "walls" the past few years including 10, 5 and most recently, 7.5 mg. Managed to get to zero for a few weeks twice before all hell broke loose again, and nowadays even the boosted pred is not stopping pain and some blood. Hoping Remi will do the trick for me.... a day into it now and waiting and hoping, waiting and hoping. If I am a non-responder, not sure how long I should hang in there, as I am starting to fantasize alot about ditching the colon. Also thinking that Refaxamin (sp.) and a couple things such as as fecal infusions (Borody approach) would be worth a shot before throwing in the can.
Posted 10/28/2008 11:30 AM (GMT -5)

Probiotic said...
We must be on the same broken record, Vin. I've hit several prednisone reflare "walls" the past few years including 10, 5 and most recently, 7.5 mg. Managed to get to zero for a few weeks twice before all hell broke loose again, and nowadays even the boosted pred is not stopping pain and some blood. Hoping Remi will do the trick for me.... a day into it now and waiting and hoping, waiting and hoping. If I am a non-responder, not sure how long I should hang in there, as I am starting to fantasize alot about ditching the colon. Also thinking that Refaxamin (sp.) and a couple things such as as fecal infusions (Borody approach) would be worth a shot before throwing in the can.

I am certainly fantasizing about ditching the colon!!  But my fantasy turned back to reality after I did some reading about it.  Looks like a long hard recovery...but at least you know you WILL have a recovery...where as these drugs is just a hit or miss. 

My pred 'wall' seems to always be 10 mg.   Coincidentally, that seems to be the point at which i start to feel human again.  So close, but so far!   I have a GI doctor appt today so I'll see what his thoughts are.  I probably have to wait a little longer for the 6mp to hopefully kick in, its only been 4 weeks. 

Good luck with the remi!  I am still undecided if i want to go that route or just go with the inevitable.

Vin

Posted 10/28/2008 11:31 AM (GMT -5)

Apetro said...
Vin, I know the feeling. I started flaring recently at 10mg/day. Not fun after you enjoy "normal" days for a while, but hang in there brother!

Seirously, once I get to 10, i start to feel 'normal' again.  And I feel like i can breathe as the anxiety is lifted from my body... and then back to pred again!!  LOL!  Can't do anything but laugh at this point.

I'll hang in there, i've done it this long, whats a little longer :).  You hang in there too... somehow we will figure this out.

Vin

Posted 10/28/2008 11:39 AM (GMT -5)
I hate pred too, I just had to go from 2.5 to 10mg and will prob have to go back up to 40. I get every side effect plus it makes my feet and legs swell too............isn't that swell (poor attempt at a joke).

so sorry you are dealing with all this!!!!!!! I know how awful it is.
Posted 10/28/2008 12:10 PM (GMT -5)
Yeah the huge recovery for a j-pouch, plus the possibility the pouch may not work well and then you end up having to go to a bag anyway, are turn-offs, but at least it is light at the end of the tunnel. It is scary though because I see a number of j-pouchers on the j-pouch forum who seem to be on remicade, cipro and even prednisone chronically even with their pouches. I mean, for goodness sake... you just can't win. But most work out well and few regret ditching the 'stupid thing' as I refer to my colon.  I guess that keeps my trying one last time to save this disfunctional tubing. Good luck to all.
Posted 10/28/2008 5:56 PM (GMT -5)
If I knew how long term and bad this would be, I would have had surgery a long time ago.
I think of all the anxiety it would have saved me!!
Posted 10/28/2008 7:35 PM (GMT -5)
Yes Seriously!! It doesn't help that i have panic disorder as well. Good thing paxil has helped me with that.

I just got back from my dr. I am getting a colonoscopy on Friday to see what the heck is goin on. He said i might need remicade. Ugh. Alot of descisions are going to need to be made.
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