so confused!!

Okay, so I've posted on here before, but I'll give a quick summary. I was diagnosed with UC in 2011 and have been on Lialda ever since without any problems, until 4 weeks ago. I had a bad flare and was put in the hospital for dehydration, I lost 5 pounds and was having bloody diarrhea (sorry to be graphic) 16 or more times a day. My doctor told me my Lialda wasn't working anymore and that I'd have to switch to a biologic such as Humira. I was really upset about this because of all the side effects, the fact that it suppresses your immune system and increases your risk for cancer. After being on IV steroids in the hospital my doctor said I could go home and continue with prednisone. I asked him if the Lialda would work again, he said he didn't think so but if I wanted to give it a try I would stay on the prednisone and then wean down and see how I feel. Well this is my 3rd week on prednisone and I am down to 20mg's from 40. I saw my doctor and told him how I was still having diarrhea but now only once or twice in the morning before I take the prednisone. I was weak and a little anemic so we both decided it was time for Humira. Of course I have to wait for it to be approved by my insurance. In the meantime he said I can stay on whatever dose of prednisone I feel best on, so I decided to stay on the 20mgs. He also said I can stop taking Lialda because it wasn't doing anything. So today I went to the bathroom as usual in the morning then took my prednisone and skipped the Lialda and I noticed that I had urgency to go this afternoon, which hasn't happened yet being on the prednisone. So it made me think , is the Lialda still working? Or maybe just helping a little?? So now I'm afraid I made the wrong choice to switch to Humira. I know i could completely wean off prednisone and see what happens but I'm so afraid I'll end up back in the hospital. I wrote to my doctor these same questions but am waiting to hear back. I figured maybe someone on here can help me sort through this?? I'm so afraid of the cancer risks and low immunity with the Humira that I want to make sure I'm taking it because I have to. Please help me out!

Thank you!!

Have you considered taking imuran
It helps prevent your body from making antibodies against the humira
It will also help your UC symptoms but it takes a couple months to really take full affect
Because you got worse without the lialda that means it is working so how about upping your dose of lialda to see if that helps
Have you tried any rectal medications?
I am all for taking biologics when necessary and I think they are great but there may be other medications you can try before biologics

Ki-wi, your understanding matches what I have been told by my rheumatologist--there's a risk of antibodies to remicade, but not Humira. He's also of the view that Remicade has a slightly higher cancer risk, but that might be because it has been around longer so there's more data.

I do not think Lialda works (or unworks) so fast. The time period is hardly enough for the meds to get into your colon, much less affect the tissue from topical contact. Maybe possible however.

No downside to staying on 2 Lialda a day IMO.

Humira may increase risk of lymphoma, but not taking Humira increases risk of colon cancer. You have to weigh ALL the pros and cons.

Could you try increasing the Lialda and adding a rectal med while you are waiting for Humira to be approved by your insurance? During my last flare my doc had me try colocort enema in the pm and cortifoam enema in the am. Both really helped me.

Sorry I wasn't more specific. I have been on 4 lialda a day for 4 years. I just meant my 2 morning pills that I tried not taking seem to change things. I take 2 I'm the morning and 2 at night. I asked my GI about taking 4 at once and he said it wouldn't help. But he did say I could stay on lialda until I switch to humira. I asked him about rectal meds and he said it wouldn't help either.

Rectal meds cannot treat pancolitis - but they do help with some/many urgency issues. It may be worth talking this through with your doc in more detail.

OK...the Lialda will only treat up to and into the sigmoid. Rectal meds treat only the rectum, sigmoid and into a bit of the descending colon.

Of that equation, you're missing the rectal meds.
I wish people would stop saying it doesn't treat pancolitis since it's not meant to. It's topical and limited, just as the Lialda and other oral 5ASA meds.

So, here's my suggestion before you get on Humira or any other immunosuppressant or biologic meds....

GET on a nightly regimen of the Rowasa retention enemas in conjunction with the Lialda. Give that a very, very, very fair try for about 6 months to see if you do improve.

If you improve...and I'm not saying all is gone...but if you improve, there's a regimen for you to follow to not go off the rectals, but to taper to a maintenance dosage.

Since you do have pancolitis, it may be a year two for you to stay on the 4 lialda. If you can treat the distal inflammation with the rectal meds, your flares will decrease to the point that's all you're having to increase med-wise.

Once you are stable....and I mean that you recognise that your flares remain limited, you might be able to decrease the Lialda, or possibly go on another oral such as Apriso.

STart on a good probiotic
Add fibre supplement with meals (gradual process).

This is bottom rung treatment...but it would be great if you can get it figured out.

If you need, try the rectal steroid meds. You have a whole list of options if you're not wanting to go the higher rung meds.

q

Humira has very statistically small odds of giving you side effects. It slightly suppresses your immune system, but it still functions. I am on remicade, similar to humira, almost 2 years and I haven't been sick any more than usual, just one cold. If you're prone to the type of infections requiring antibiotics to treat (UTIs, bronchitis, sinus, etc) then seek antibiotics when you first get symptoms rather than waiting another week to see if it passes in it's own.

It's all about risks versus benefits. The odds of humira helping you are 60+ percent. The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. The odds of death due to heart troubles is 1 in 5, in a car crash are 1 in 133, so we're talking really small odds for biologics. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The odds of developing antibodies to humira are less than remicade, but one can still develop them. I'd ask your gastroenterologist if you need immunosuppressive medications as well (imuran, 6mp, aza).