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I guess Imuran/6mp is the next step?

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Ulcerative Colitis
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Posted 12/4/2011 8:32 PM (GMT 0)
I have been on Prednisone for 9 months now.....Everytime I have started at 40 mgs, and it clears it up in a few weeks, then when I get down to 20 mgs I start to bleed again. So, the doc shot me back up to 40 mgs for a month and extended the 30 for 6 weeks instead of 4 weeks, then I just went down to 20 and here we go again...Its so frustrating because, once I get to 20, the bleeding starts again. I am also on 4 Lialda a day, Hydrocort supp, and Rowasa, but those obviously aren't enough (I have left side/proctitis)....I have an appt tomorrow, I'm assuming he is going to recommend starting Imuran or 6mp and go back up to 40 again. Has anyone been on Pred for this long of a time? Anyone have any suggestions for the appt tommorrow
Posted 12/4/2011 9:17 PM (GMT 0)
i started taking 6mp while on prednisone because prednisone wasn't helping at all. i was on 6mp for about a week and then started remicade. my doctor acted like i couldn't take 6mp without remicade so i am still on both. i guess i wasn't on 6mp long enough by itself to know that it made a lot of difference. i remember it helping with the cramping. the remicade really changed everything though.
Posted 12/4/2011 10:16 PM (GMT 0)
If I were you, knowing what I know now, I would demand a biologic because Prednisone could be destroying your bones like it did mine. I just had surgery on my Left femoral condyle (knee joint) that died from what my Dr belives is steroids use and I was just MRI'd and it is in the opposite knee also so I will have to have the same surgery on the opposite knee. The unfortunate thing is this surgery is usually not successful which could mean a double knee replacement in the near future. Considering that I am a Paramedic and I will become disabled, I am devastated and am trying to warn people about long or high dose steroid use. Don't let what happened to me, happen to you!
Good luck!
Posted 12/4/2011 11:19 PM (GMT 0)
I agree with pmedic. Get off prednisone as quickly as you safely can. I may be biased against prednisone because I have been trying to get rid of the side effects for months but my story is very similar to yours. I was on pred, 40mg for a week, tapered at 10mg a week to 2.5mg, symptoms came back. I went back up to 15mg to try to get back on track. It didn't work. I was trying antibiotics, 5ASAs, rectals and everything else available at this time. Nothing helped. I had to go back up to 40mg! By this time, I had been on pred for 6 months. I wanted off. I was gaaining weight, having joint pain, I looked terrible, couldn't sleep. I was on 40mg for 10 days before I was able to taper to 35mg without symptoms. I tapered down to about 15mg and symptoms were starting to arise. My GI told me 6mp was the next step. I really didn't want to go that route because I was scared. Finally, I realized I wasn't going to be able to get off pred and the sooner I started the 6mp, the sooners I'd be able to taper off. I wasn't one of the lucky ones who saw results with 6mp right away. It was a struggle for me. My WBC dropped dangerously low, I had elevated liver enzymes & toxicity. Evnetually though, I was able to get my counts back up and things in order, my UC went into remission and I've been doing much better. I've been off prednisone for about 6 months now and I am just finally getting my chin back. 6mp isn't so bad. I should have started it when my GI first mentioned it as an option.

The fact that you're having trouble at 20mg, a hefty dose, is more of an indicator that you need something stronger IMO.

Posted 12/4/2011 11:41 PM (GMT 0)
I just stopped 6 mp after nine months, because still flaring after adding Remicade in aug. So I think I am done with both. Now back to Apriso, 10 pred and hydrocort. I am having weird heart palpitations though, skipped beats with a need to cough. And still flaring thouggh not as bad. This happened to me before, when I was on asacol and pred. Always thought it was the pred, but not 10 mg, so could it be the Asa. Also after I started the 6 mp my hair actually stopped falling out and now that I stopped it it has started falling out again??? Can anyone relate to any of this. Seriously considering surgery still.
Posted 12/5/2011 1:36 AM (GMT 0)
thanks for the info...hopefully things will work out!
Posted 12/5/2011 7:26 AM (GMT 0)
I've been on/off pred all year. I'm down to 10mg & on 100mg 6mp all year. I'm not flaring much right now but I know there is still inflamation. If I get worse I'm not doing pred again I dont think. Remicade I guess. Pred is cool if you can taper fast and be done with it, but 9 months straight is nuts. Obviously you flare when you taper down on pred, cant be on pred 40mg forever, your gi should have had you on 6mp or imuran this whole time?? It takes a while to kick in and work. Hope you achieve remission soon.
Posted 12/5/2011 1:59 PM (GMT 0)
I def agree 9 months is a long time for prednisone and I too have had some problems with the long term use affecting my bones and joints. And I'm with Cadillac lover has your GI given you a reason why he wasn't raising the dosage on 6mp while you were on prednisone? 20mg of pred seems to be the make it or break it number for a lot of people. Myself included, where if you dip below that symptoms come back. It might be time for remicade or Humira. notsosicklygirl mentioned something stronger might be needed and I second that.
Posted 12/5/2011 2:04 PM (GMT 0)
Imuran is not to be feared. It has gotten me off prednisone for the most part with zero side effects.
I was pred dependent before going on imuran. it changed everything.
It's not perfect, so make sure you get your blood work doebe every 4 months or so.
best of luck
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