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Ulcerative Colitis
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Posted 10/1/2015 3:34 AM (GMT 0)
So I was diagnosed with mild UC 4 years ago. I was put on Lialda 2.4g twice a day. In May I had my first and major flare and the doctors said Lialda wasn't working anymore and put me on Humira. I was on Humira for 5 weeks when I developed pancreatitis and a UTI and ended up in the hospital. Needless to say I can't go back on that medicine. I just had another colonoscopy done and now they said I have severe colitis. I've been on prednisone on and off since end of May. They want to put me on Remicade, I can't take other biologics because of my reaction to Humira. I'm very reluctant to try it though. Right now my only options are Remicade, maybe entyvio and then surgery. I'm seeing a colorectal surgeon in 2 weeks for a consultation and until then I'm on 20mg's of prednisone. I don't know if it's the severe inflammation or the prednisone but I've gained about 4-5 pounds and sometimes my stomach sticks out like I'm pregnant and it's so uncomfortable! I take gas x and then helps sometimes. I also take a 1/2 packet of VSL #3 everyday. Does anyone else get this as a symptom of UC or prednisone? And what can I do for it? I feel so disgusting and ugly. I went from 103 pounds to almost 110!
Posted 10/1/2015 3:47 AM (GMT 0)
Prednisone has a wide range of side effects including weight gain and bloating which are two of the more common ones. I'd be wary of another biologic if one already gave you pancreatitis but the docs are the experts and they would no doubt have you closely monitored given your history. Remicade has worked wonders for me.
Posted 10/1/2015 4:01 AM (GMT 0)
Monitor the bloating as you want to be sure you do not develop toxic mega colon.
I understand the maintnence dose of lialda was not working but maybe they can give you max dose of lialda (4.8 grams) and rectal mesalamines and steroids as well as starting 6mp/imuran
Because it will take time for 6mp/imuran to kick in you may need to do a 40 mg pred taper to bridge you over
You will need close blood work monitoring if you take imuran

Entyvio is another option but it does take some time. I would do that at the same time as max oral and also rectal mesalamines
Good luck
Posted 10/1/2015 4:55 AM (GMT 0)
Humira was bad for me as well. I would consider remicade and do some research. I've had pancreatitis as well while on remicade but it was of unknown etiology and I've continued with remicade. Basically, study up on the other biologics and see if you are a good candidate before going straight to surgery. As far as prednisone, the weight gain is part of its evilness. I've been on it many times without gaining weight but time before last, I gained about 25 lbs and was horrified. I've always been thin borderline skinny with a flat stomach and that time my boobs were enormous and I had a gut. Don't worry, you'll lose it. It happens to a lot of us.
Posted 10/1/2015 5:14 AM (GMT 0)
I am on the max dose, sorry if I worded it weird. I take 2.4 grams twice a day which is 4.8 grams. They don't recommend 6mp for me or any immunomodulators because of the fact that I had pancreatitis on the humira. I'm just afraid of remicade in general because of all the side effects: cancer, lowering my immune system makes me uneasy, losing my hair.. it's just really scary. I feel like I'm stuck between a rock and a hard place and I hate it, and I hate this disease.
Posted 10/1/2015 10:09 AM (GMT 0)
So they put you from Mesalazine to a Biologic? They completly skipped the immunosuppressants. I would ask about Azathioprine or 6mp.

I was on Remicade when I had to stop it and I did the step back to Azathioprine and I've been in remission since.
Posted 10/1/2015 3:27 PM (GMT 0)
They skipped immunosuppressants because I got pancreatitis from the humira. They are more likely to cause it.
Posted 10/1/2015 3:47 PM (GMT 0)
You can get pancreatitis from meslamines (lialda, asacol hd), immunomodulators (6mp or Imuran), and biologics (remicade, humira). That's pretty much all of the uc medications. The odds are very low for all. I'm not sure that if you got pancreatitis from one that they all would, that seems suspicious/incorrect to me... I'd like to see some evidence/research backing that up.

It seems you do have medication left to try (imuran, 6mp, humira, simpini, or entvyio) before surgery becones necessary. I understand the concern about pancreatitis, it's excruciating pain, but I am not sure your odds of it are as high as you might think them to be.

I think a surgery consultation is smart to know all your options. Just don't assume all your doors are closed at this point.

I'd get a second opinion from another gastroenterologist on your medication options.
Posted 10/1/2015 11:57 PM (GMT 0)
I did get a second opinion with a crohns and colitis specialist and they also agreed that I need remicade or 6mp but they don't recommend the 6mp type meds because I had pancreatitis. The only reason that remicade is an option is because it has mouse protein while the others have human protein. They said because my lipase enzymes were so high on humira they wouldn't put me on that or a similar biologic again.
Posted 10/2/2015 12:52 AM (GMT 0)
Remicade should not cause hair loss.
However colitis does.
Posted 10/2/2015 1:40 AM (GMT 0)
1/2 packet of VSL#3 is under dosing. 1 packet of VSL#3DS (double strength) is equal to 2 packets of VSL#3 and the DS is what has been tested and shown to make a positive benefit to UC. You are taking only a quarter of that dosage. Increase slowly to get up the amount so you don't get increased gas.

20mg of pred. is pretty low but if you are doing OK symptom-wise without taking any other RX you aren't doing too badly, at least for now.

No one can answer what your next meds should be. You know your history and what chances you are willing to take. Previous posters make good points but it's your body and gut.

Your weight gain can definitely blamed on pred but the bloating sounds like UC inflammation.
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