To med or not to med...THAT is the question

[Rissa9776]

Hi everyone!
I'm a 37 yr old woman who was diagnosed in 2008 with Ulcerative Colitis.
Started me on Lialda and Asacol. I was off and on the meds since my symptoms were mild. I only had a few flare ups.
I had a follow up colonoscopy this past December which showed major inflammation. Doc put me back on Lialda and then I switched to Asacol. In March my ankle joints and achilles tendons swelled so bad for two months! Got a new GI and she put me on entocort and 6MP. I just got out of the hospital (3 days ago) due to pancreatitits that I feel was a result of the 6MP. ALso, said it looks as if I now have Crohn's. (My mom battled Crohns for many years and is in full remission) I was sent home on antibiotics, prednisone and Lialda. My crossroads now..and my question to some of you...
6MP again? or Humira? or does anyone know if I change my diet and stay on Lialda could I go back?
Hope to get some good feedback!

 

[theOcean]

I find that most people actually seem to tolerate biologics like Humira far better than immunosuppressants like 6mp! I have severe fistulizing Crohn's and I'm being treated with Humira. No side-effects and it's been amazing for me and I'm in complete remission now!

Lialda also likely won't be strong enough if you have Crohn's, though that's not always the case. UC affects only the top layer of the intestine (I think?) whereas Crohn's permeates much deeper, so medication like Lialda isn't usually effective for it.

 

[Rissa9776]

Thank you for your response. I keep reading all these horror stories of people on Humira...some with awful irreversible effects and others with near death experiences.. I have a young boy who needs me and I don't want to make myself any sicker than I currently am. However, if I dont treat it correctly, I'm bound to get ill anyway.. It is such a risk,,,,I'm so conflicted....

 

[theOcean]

Unfortunately, untreated/improperly-treated Crohn's is actually much worse than any of our potential side-effects of medications for it, and if they do work for you, it's definitely worth it.

If you do go on biologics, you get regular blood tests, and lots of monitoring! If you get Remicade you're usually supervised by a nurse, and they're very careful to make sure nothing happens to you during the infusion. Humira you're not monitored after the initial training, but they make sure you would be safe self-administering. In both cases: pre-meds are available (Benadryl and/or steroids) to help prevent allergic reactions if there even are any. And if you do notice anything unusual: you should contact your doctor immediately.

With all that in mind: you really should be safe. And it's better than the alternative. I developed such bad complications from the last flare I had, and I nearly died. After that, I was put on Humira, and I can honestly say it's saved my life. I don't even feel like I have an illness anymore. I just take a little more medication than most people, and I'm perfectly fine with that.

So yes, it's definitely something that's difficult to make a decision about! But hopefully you can decide what's best for you and your boy. I'm sure he wants to see you doing well, too.

 

[my little penguin]

DS started biologics at age 8( remicade) switched to humira last April 2013 due to a allergic rxn to remicade.
He tried all the other drugs ( pentasa , 6-mp, Mtx etc...)

Humira is one of the few drugs that has no side effects and lets him be a kid.

Good luck