Hey There,

I just wanted to mention it's been super quiet here lately so you may not get a response right away. I just didn't want you to think anyone was ignoring you.

Hope you get to feeling good soon.

So sorry to hear you are flaring. You remind me of myself w the denial part of your post. I can relate. I have no experience with those meds, so I'm sorry I have no comments. I hope they are effective for you.

Hi Terrifico,

I am on Mercaptapurine and Remicade along with Apriso (a sulfa med I believe). I know you are leaning away from the Remicade infusions, but that is the one I have experience with. I have had good experience with this combination. The Mercaptapurine has caused some sleepiness, so I take it at bedtime. Be aware of that with some of your meds if you are tired during the day and try taking them at night to see if it helps. It can help with your sleep and then you are awake for the daytime!

I do not have to worry about missing work, so the infusion does not interfere with any of that. After an infusion I can have some 'off' days for 3-4, sometimes 5 days, before things 'settle' out. That is partly because with the infusions they give you a 'pre' bag of medications with a steroid (NOT prednisone) and benadryl to help prevent any side effects from the Remicade during the infusions. Thus it takes a little time for the steroid to get out of my system as well as it takes a few days for the Remicade to 'settle'.

I know that if the Remicade ever stops working for me or if the Dr decides it is just not working well enough that I will try the Humira shots. That is one good thing. If one does not work out well for you then the other might work very well for you. At least there is that chance.

One thing I know is that with Remicade the infusion is normally given every 8 weeks (2 months). I have medically resistant UC and am going every 6 weeks (not usual). I believe (do not quote me on this part) that the Humira is taken about every 2 weeks. At least I think that is how often it is for RA (arthritis). I am not certain what the frequency would be for the UC. It might work a little nicer taking it more often.

I hope that which ever one you try works out well for you. And if that one does not work out that the other does the job.

Hi, I am a mom of 2 kids both with Crohn's Disease. My daughter is 21 and on Remicade with a steroid she has a lot of damage from being undiagnosed for so long. Remicade is a healing drug. She does not mind the infusion, it is inconvenient as heck. We have to go into the city and she cant go anywhere for long periods of time. College was fun she had to come home every month. She is on every 4 weeks.

My son take Humira shots every 2 weeks. His Crohns was caught much earlier, thanks to my daughter. Humira is way more convenient , except he wont do the shot himself and he doesnt like the way I doit, so my brother in law comes over.
Both of them are different in what they can and cannot eat. Neither watch their diet as well as they should.

Neither complain about any side effects to remicade or Humira
I hope this helps

You're kids sound tough as nails and pretty well adjusted. Good for them!

Thanks everyone. That was helpful and encouraging.
I'm pretty sure I've decided to try Humira without the methotrexate. I just have a bad feeling about methotrexate, and with my history of severe reactions, I only want to start one new drug at a time.
I have a few more steps in the process before I start. Colonoscopy tomorrow, vaccinations next week, TB test scheduled. I'm hoping to start in about two weeks.

Good luck!

Good luck! It sounds like you have a good plan. :)

I have been on Humira since December and I feel like my old self again. I am back to substitute teaching and have planned a trip with horses to North Carolina to do some trail riding. This place is 8 hours away. Before I could never gone that far away from home with my UC.
I got on a plan for the shots that only cost $5.00 through Humira.
I also have a trip planned to visit the everglades in Florida and that is about 12 hours away. I still have to watch what foods I eat, but you will learn your triggers.

Hi Teffico, I have both Crohn's and MS so any of the TNF drugs like Humara are out for me since that can cause or exacerbate delmilating illnesses like MS. Initially we tried to get approval for Entyvio, insurance wouldn't approve (long story). Although it's an infusion drug, it's supposed to be superior for UC and Crohns. If you're worried about infusions with life interruptions, it's really not as bad as you would think. It's usually about 3 hrs once every 4 weeks and if it works...

I'm currently trying Stelara. Although it's not FDA approved in the US yet for Crohn's it's done very well in the clinical trials and after fighting with my insurance I was able to get it. After the first 2 doses 4 weeks apart it's only 1x every 3 months. I've only just taken my second starter dose so I don't have anyway of knowing if it's working yet. But I thought I would throw those out there incase it might be helpful in discussion with your gastro.