advice/questions about humira

"If Humira is going to work for you, how long until you see an effect?" Biologics, such as Humira, are fairly fast working drugs. Some report improvements within 48 hours. However, many see improvements within the initial 6-week timeframe. It took me 3 weeks to notice an improvement on Humira's sister medicaiton Remicade. With severe inflammation a 4/5 then I wouldn't expect a response in less than a few weeks time. Those with milder inflammation likely experience much faster relief.

"If it does work, is it ever possible to come back down to lower level meds? Has anyone ever successfully done this?" The general recommendation is not to once you start a biologic. Can it be done? Sure. Why not stop them? If biologics work brilliantly for you then ceasing them and restarting them later may not work or at least not as well. Our immune systems can develop antibodies to humira upon discontinuation, which make it ineffective. It's a risk to cease it, that it may not work for you again. You can certainly discuss it with your doctor, if it's something you're considering. I wouldn't consider it until you've been in a solid remission for at least a year or more. Focus on healing first, once you achieve a remission THEN worry about what you need in a remission. Often we do need less meds to sustain a remission than we did to achieve it. Reducing your meds during a remission does carry a risk of re-entering a flare though, just an FYI. It's all risk management and what you, personally, are comfortable with.

You were lucky all of those years, now you might need ongoing medication like the majority of UC patients. It's just the reality of UC. UC can spread, get more severe and require a stronger treatment as a consequence thereof. UC is anything but predictable, or consistent on what we can expect from it. Just because you had an easy course is no guarantee of a future easy course of it. UC prognosis is highly unpredictable.

I would keep using the humira! A lot of people take it and love it. All it's doing for the most part is telling the inflammation signals in your body to go away. Nothing too scary besides the shot (:
I've been taking mercaptopurine wich is a similar idea of toning down the immune system a little bit and it's worked for 5 years so far!!! Also maybe you could suggest a Mesalamine Enema? Just to Have a bit of extra fire power helping you out

Thanks for those supportive responses. Gives me some hope!

Meanwhile a question. I am now on 60 mg of prednisone, 4.8 g of Asacol HD, and melamine enemas. During my most recent remission I took 2.4 g of Asacol HD and melamine enemas as needed.

Since being back on the prednisone since last Wednesday, I have less blood and frequency but liquid diarrhea, as in what I usually see when I prep for a colonoscopy. Could I be reacting to the 5-ASAs? My GI dismisses this idea since I took them for so long with success. All I am looking for here is a formed stool. I saw some while I tried Uceris, but only here and there.

Has anyone else had this experience of developing a sudden intolerance to a 5-ASA formulation? Is it worth trying Lialda or sulfasazine again (I took sulfasalizine in the 90s when I was first diagnosed)? Backing off the enemas or switching to hydrocortisone? Why are some doctors so closed to tweaking and switching things up?

Fadoozle, have you had a srool test to rule out c diff, as it mirrirs uc flare symptoms but only responds to antibiotics? Yes it's possible to develop a mesalamine intolerance at any time. However the vast majority are upon initial usage. Try a lower dose or skip a day of mesalamine and see if the diarrhea goes away (90 percent topical med that stays in your system 24 hours or so).

fadoozle, if you are in the US look into the Humira Complete program. Abbvie offers co-pay assistance, a nurse who will come to your house to help with your first injections, a cooler pack and a large sharp disposals container. Also, let your pen sit out of the refrigerator for at least an hour prior to injecting, make sure the alcohol is completely dry before you inject, remember thumb on plum, take a deep breath and inject while slowly counting down from 10. It honestly was so much easier than I thought it would be. I was a nervous wreck on the day I did my loading dose and I felt silly after because it was such a non-event. Good luck, I hope you get great results!