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Steroids not working..... WAAAAHHHH!!

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Posted 9/11/2009 5:40 AM (GMT 0)
Well.. I am SOOO Bummed tonight....  have been tapering down on the Prednisone, and got down to 15mg... then a few days later, I noticed a bit of blood on the tissue one morning.. I called my GI and he told me to go back up to 20mg for 10 days, which I did 3 days ago...   Well, tonight I did a poopie and the blood is back.... Not in the toilet water, but a lot on the tissue.. ANd, I have been feeling under the weather for the last couple of days, which is now all explained by the blood..   SO... My next step is to call my GI tomorrow.. He's probably going to want to put me on either 6MP or Imuran... I did research on both drugs and they are scary to me!!! I don't know if I want to go that route, but he said I have to try those drugs first before putting me on something like Remicade.... Which I don't know if I want to go THAT route either...

   I feel scared to death at this point..   I'm considering just having the surgery and being done with it..   So I have a colostomy bag..  At least I'd be cured and not having to pump chemicals into my body to feel somewhat normal, some of the time...  Any feedback is appreciated.. I feel so depressed right now.... !!!!!!

Posted 9/11/2009 5:44 AM (GMT 0)
I know it's a bummer, I felt the same way when pred stopped working all together for me, it was the only oral RX I could take that worked plus the only side effect I got from it was some acne on my back....I ended up going about 7 yrs using absolutely nothing for medication/therapy then I got really super sick and that was when I put my skeptisism aside and went the natural route...thankfully it's been some help.

Of course surgery is an option for you, but there are still plenty of other meds to try if you haven't already, good luck and I hope you feel better soon.


:)
Posted 9/11/2009 5:56 AM (GMT 0)
I'm in the same boat. I have been taking 35 mg Pred for 4 weeks before I felt a little better. This is the second time I was put on Pred. During the first time I felt better just after 3-5 days.
I have tried Azathioprine (Imuran) twice last year. Had to stop because of poor bloodwork. This time my doctor pushes me to Remicade, which I'm unprepared for, mentally and financially. She said the only alternative will be colectomy.
You can try 6mp or Imuran. They may help you to reach remission. Good luck.
Posted 9/11/2009 1:20 PM (GMT 0)
You won't have a colostomy; your choices will be a permanent ileostomy, kpouch or jpouch. Honestly, surgery was the best decision I ever made but I don't think you should give up medication just yet. The immunosuppressants, Imuran and 6MP aren't that scary at the dosages UCers take them at. Frankly prednisone is the scariest of all the UC drugs and the one to avoid. I can understand not wanting Remicade, I am glad I never had to make that choice. For me it's just too new of a drug. When I was on 6mp in the 1990s there was concern about long term side effects but a study in the early 2000s indicated it was safe at low dose. You might want to have a surgical consult just so you know what your options are in the event you decide at some point to choose surgery.

Sue
Posted 9/11/2009 8:49 PM (GMT 0)
you should try the following before you even consider surgery. I would reccomend them in the order listed:
Colozal (5asa)
Sulfasalazine
asacol
humira

Just my opinion, but i think your gi dr will agree
Posted 9/11/2009 9:19 PM (GMT 0)
Yes, I too am on 40 mgs/Pred. with no positive results after two weeks...
Also, I am having a terrible time with he steroid this time- I HATE the way I feel on it. After so many years of problems with prednisone (including osteoporosis, sores in my mouth, insomnia, and generally feeling just awful on it), I am opting to begin to dose down and look into other options. In the past I had stayed on way too long and had been up to a higher doses, and I feel (wrongly, perhaps) that if it were going to work, it would have. I feel as though my body cannot take the pred. another time, I'M DONE with the side effects!
I am already on 6MP, and have been for years (was 50, up to 100 for this flare up). I have had NO problems with this drug, my blood work isalways fine and I feel aok on it. I was in a perfect remission for almost three years, which make this bout so disappointing.
My next move, if I don't improve, will be to again discuss remicaide. I will def. opt to try that before surgery. I had consulted about surgery in the past, and I know that it is a possibility in my future. This is such a rough road, I know. Hang in there!
Posted 9/12/2009 12:37 AM (GMT 0)
I have been on Imuran for just over a month and it is not bad.  I have had no side effects to the drug.   I have no stomach pains no sick stomach.   The only down side is the blood work.  I have to go every week for tests.  That is the worst of it so far.  I take 150 mg's a day and 20 mg's of prednisone.  I hope that gives you a little bit of help.  I was really scared to go on it but it is not too bad.  Now that fall is coming I will have to see because I get sick very quickly anyway so I will have to see what happens when I get sick and how quickly I will get sick.  I have a 3 year old who is in day care will 30 other children so I know he will bring some kinda bug home with him.  Well I hope that helps.  If you have any questions just give me a shout. 
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