Starting methotrexate, maybe?

GI called today to say she wants to keep me on Remicade, take me off of Imuran, and have me start methotrexate injections next week.

I've been on Imuran since March, and just increased my dosage to 175mg three weeks ago.

None of these medicines scare me, but I am really scared of needles and I don't know if I can self inject. I almost passed out at work today reading a self injection brochure. I'm really nauseated just typing this!

We don't seem to have too many UCers on methotrexate, according to search. Any stories to share?

My mom takes it along with Remicade for her RA. She takes it in a pill form not an injection. Quite a while ago my GI said it isn't very effective in treating UC. Maybe things have changed. Good luck.

The pills are definitely useless for UC, injections work sometimes, and it stands to reason it can improve Remicade response the same way that Imuran does. I was on methotrexate injections for UC with Cimzia and later with Remicade. I thought I saw a positive response after my first injection, but nothing after that or long term... could have been a blip.

It is really super easy to do the injection. I understand your nervousness though. I don't mind needles or injections at all and it still took a bit of psyching myself up to jab it into my thigh the first time. Pick whatever area (arm, belly, thigh, etc) that makes YOU the most comfortable. Some people told me my belly would hurt the least, but I had a mental block about doing it there -- thigh made me the most sense to ME so that's where I did it. Pinch a big wad of fat (as much as you can, anyway, sigh), count down from three, and just do it. Close your eyes if you have to. Even let out a little battle cry! Do you have a friend/SO/family member who might be willing to do it? It's SO easy but the first time it is hard to override that natural instinct not to stab yourself, even with a teeny tiny needle! I am very squeamish about killing cockroaches in my apartment (sigh) so if I'm alone and I have to do it, sometimes I call up my mom and put her on speaker phone to get a pep talk... LOL... something like that could help you just DO it!

Don't get scared reading about methotrexate side effects online. Methotrexate is usually given at MUCH higher doses for chemo and that's when the scary and unpleasant side effects come into play. I never lost my hair nor did I have nausea. I can't say it helped me, but I don't think it hurt... and I learned that I can give an injection which I'm kind of weirdly proud of now!

I did MTX shots for 3 months. The needle is tiny. I did it on the top part of my thigh. Have you done humira? It is much easier than that. Or it was for me :)

Unfortunately mtx did not work for me. It made me very tired the 24-48 hours after I did the shot. And my GI said to really watch my alcohol intake while on it.

Hoping it works for you!

I can't drink with my UC anyway, so that's no problem. I'd love a beer, but it is not worth it symptom wise for me. No babies either. My baby is going to be a senior this year :)

I have not done any injections. I know it is an insulin syringe, and they're very small. They're still creepy needles *eep*. Remicade and all of these blood draws have been a challenge for me, but doing it myself is a special kind of scary, almost more scary than surgery...

Almost.

My insurance does not cover this medication. Ten weeks is only $44 out of pocket though.

I have my needles. They're 3ml 25g x 1 - they're NOT TINY!

Does a 1" needle sound right?


The Humira pen is 1ml 27g x 1/2.

What does this have to do with surgery?

I bought myself three more weeks for the higher Imuran dosage to work!

My Remicade levels are really good, but I am not in remission. As I suspected since I started last August, Remicade really isn't going to do it for me, but it may be having some effect, so I'm going to stay on it for now at the same dosage / frequency.

My 6TG level was only 87 on 100 mg of Imuran. I'm now on 175 mg, and I think I'm having a positive response. So we're going to test my metabolites again in three weeks. She'd like to see the 6TG around 250.

If my metabolites are improved in three weeks, I am going to start tapering the hydrocortisone enemas so she can get a "good" flex sig in about two months.

If not, we're going to scrap Imuran and try MTX instead. She does think that is the last viable drug option for me, because my Remicade response is suboptimal, so she does not expect a better response from any of the other biologics with the same mechanism of action.

She also mentioned a Vedolizumab trial that should open in a few months as a possibility, which she thinks could work since the mechanism of action is different.

I just want something to work. I'm feeling ok off of oral steroids right now, and I do feel something is changing this week. I hope it is the Imuran kicking in. I would love to try out this "remission" thing I keep hearing about...