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Ulcerative Colitis
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Posted 7/29/2015 2:05 AM (GMT 0)
I was diagnosed in April. I did the high dose prednisone first for a month with the taper. Then took two lialda and four endocort tapering to one after two months. Now I take one lialda and one endocort but symptoms are coming back. I have not gone into remission. The doctor wants me to take Humira but it scares me. Once I go on it can I ever get off it? Does it boost you to remission? Can I go back to lialda? I'd appreciate any thoughts. Thank you

Post Edited (Cadillacwomen) : 7/28/2015 8:16:27 PM (GMT-6)

Posted 7/29/2015 2:20 AM (GMT 0)
I went on Remicade and back to Imuran after that and I'm in remission.
Posted 7/29/2015 2:22 AM (GMT 0)
I hope someone who takes Lialda will comment on your dosage but I don't understand why your dose was lowered from 2 down to one if taking 2 did not eliminate your symptoms. Why lower the dose?

What UC diagnosis were you given (left-sided, pan colitis, etc)?
Jumping to Humira 3 months after diagnosis seems premature without trying several other oral pills but we need to know more about your diagnosis.

Have you used rectal meds yet? Mesalalmine enemas are very effective once you get over the learning curve and definitely need to be considered before moving onto stronger drugs like Humira.
Posted 7/29/2015 2:25 AM (GMT 0)
I was taking 4 Lialda for a few years before my doctor would even consider reducing it to 2 a day.

I am also on Imuran 150mg per day.
Posted 7/29/2015 2:59 AM (GMT 0)
I just realised that I have forgotten to update my profile to show my current meds.
Posted 7/29/2015 3:29 AM (GMT 0)
That's a real stupid treatment plan. You should have been on 4 Lialda the entire time and stayed on it until you reached remission and then tapered back to three and then maybe two. You should never take less than two, even in remission. Entocort is not a great med for UC because it usually releases too far up to be of much benefit for a UC'r. It is used more for Crohn's than for UC. You should have been on rectal mesalamines in addition to oral Lialda. It's stupid to try the harsher meds when you haven't even done full doses of the safer meds first. Your GI pobably has an attractive Humira rep who buys the staff lunch.
Posted 7/29/2015 3:52 AM (GMT 0)
why on earth would they try tapering you off lialda and than suggest biologics?!
you should have been given uceris or a different steroid not entecort (as gary said)
i would suggest you start taking four lialda and make yourself an apponitment with a different GI
good luck and feel better
Posted 7/29/2015 10:59 AM (GMT 0)
I have leftside UC. It didn't make sense to me either. I read much higher doses of lialda. I also wondered about endocort. Guess I will need to seek out another GI doctor. Unfortunately that means at least a 90 minute drive. It's hard to have a discussion with him. He had me take a genetic test. Costs $900 and then did not want to talk about it. He did dx me when no one else could.
Posted 7/29/2015 11:08 AM (GMT 0)
Typically, one remains on 4 lialda a day and a meslamine based suppository (canasa) or enema (rowasa) until reaching remission. If more medication is needed, then an immunosuppressive medication, such as imuran, 6mp, or aza is added. If that isn't enough then biologics, such as remi, humira, or simponi is added. Sometimes biologics are added earlier, due to patient condition.

Doesn't make sense to taper off lialda. Combination therapy is often the best approach, so you'd likely continue lialda while on humira or Imuran... Only reducing medications once reaching remission, not before.
Posted 7/29/2015 11:49 AM (GMT 0)
That is what is see too but the largest dose I had was two lialda and while he said I was not in remission he lowered dose to one. I called his office after an uptick in symptoms and he doesn't want me to increase lialda or endocort, said next step is humira. I guess I'm headed to a second opinion. Thank you for the confirmation.
Posted 7/29/2015 12:55 PM (GMT 0)
I think you are making the right decision
I don't know if you have enough lialda to up to it four until the next visit with a different GI but you might want to do that
(Is it possible your pcp can prescribe lialda for four times a day so that you have enough?)
Posted 7/30/2015 8:37 PM (GMT 0)
I had a good conversation with my doctor. I did go back up to two Lialda. He is concerned about side effects. I've had one UTI and a horrible sinus infection in the three months on it. I am very prone to infections. Also my legs are feeling very weird. Weak and unsteady. That's why he wants me to consider Humira. It's been four months and I'm still not in remission. He doesn't want me taking more Lialda. I get worried about the side effects of humira. I also hate needles. I have hasimoto disease as well. It is an auto immune disease. I also have servere gastritis and Barrets. My digestive system isn't good. What are your thoughts on humira?
Posted 7/30/2015 8:58 PM (GMT 0)
I would think that you would be more prone to infections on Humira than on Lialda so I really don't understand why he won't increase Lialda to the max dose to get you in remission. I think it was just a coincidence that you had the UTI & sinus infection after you started Lialda. You said you are prone to infections anyway.

The weakness in your legs could be from a potassium imbalance caused by flaring for so long. Try eating more foods that are high in potassium and see if that helps. This happened to me during my first really bad flare. While I was in the hospital they gave me potassium supplements, but when I got home I had to get more through my diet.

We're not doctors here, but I beg you to get another opinion ASAP because your current treatment plan makes no sense to me and with your already compromised immune system from Hashimoto, I would be really hesitant about any med that would suppress it even more.
Posted 7/30/2015 9:30 PM (GMT 0)
Hashimoto is my immune system attacking my thyroid. Yes I probably need another opinion. Thank you
Posted 7/30/2015 9:30 PM (GMT 0)
Yeah. I don't see the logic in worrying about side effects on the extremely safe med Lialda and consider Humira, where the commercials on TV are about 90% talking about all it's side effects, including fatal infections. Lialda is a 90% localized drug and not systemic. Doesn't make sense to me.
Posted 7/31/2015 10:56 AM (GMT 0)

garylouisville said...
Your GI pobably has an attractive Humira rep who buys the staff lunch.

LOL
Seconded, I think that's what's happening here. Use oral steroids to get you current flare under control while you plan a good maintenance strategy going forward.
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