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Meds and Chrohn's

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Crohn's Disease
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Posted 6/27/2014 6:58 PM (GMT 0)
ok i am searching for meds used on us chrohnies that have it rough.  have to explain a liittle about me.  Took out colon and removed part of the small intestine.  I have been on Humira,remicade,cimizia, i am on Stelera now.  I don't think it working for me.  What does work for me is my lovely Predinsone.    I get them darn flarups.  Right now i have lots of pain in the stomach today it is on the top of the belly, usually is on the left side.  Waiting for a Pouchostomy in august to see if there is any improvement since last scope.  If not i am going to tell the doc, i want to go back on Cimizia.  I did good on the drug until Dec.  Then my doc and doc from Mayo decided to try the Stelera.  Sure can't but want to argue with them.   Trial and error.  The stelear is not yet fda approved for chrohn's so you can immagine the price on it.  $17,000 a month.  Thank god for good insurance.   sure would like to try the medical marijuana oil or what ever it takes.  Sick of all side affects of all the meds i have been on confused    yes there are more good days then bad.  But, the bad are bad.  you all know what i mean.  time for  break.  Talk later.  Have a good day all.  yeah
Posted 6/27/2014 7:33 PM (GMT 0)
I think you're asking about what other med options you have. I was good on Cimzia for about 4 years before it stopped working and then attempted to try Stelara but it was denied by insurance so I am currently using Simponi. I have been on it about a year-ish now and it seemed to by somewhat helpful for a few months but my symptoms are slowly coming back. I am going to ask about vedolizumab when I go to the GI on the 7th. I would like to find something that works before I get pregnant.

Are you on immunosups too? I am also on 6MP and have been for several years. I was just recently upped from 75 to 100mg daily. I am hopeful for Entyvio as it's my last effort before I think about Tysabri.

Additionally, based on my understanding- there is a high chance that if you were to go back to the Cimzia after stopping it, it won't work. Why did you go off of it if it was still effective?
Posted 6/27/2014 8:14 PM (GMT 0)
yes you are right. Looking for other options.
i am assuming you are asking if i am on immunosuppression? If so no i am not. as to the cimizia. I ended up in the hospital in december and doc figured it was not working any longer. The reason i ended up in the hospital was Hi fever 104. then of course, it triggered my chrohn's. I was ticked when the took me off of cimizia. Seemed to be working just fine, over a year until i ended up in the hopital. Of coures it was over xmas.
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