Remicade working?

Had the 2 loading doses so far. Thought I was doing better. Mornings not so good. Blood has stopped so that’s good. Why the mornings? Sometimes after eating I have terrible cramps. Thanks to dicyclomine I have some relief. I know it’s too early to be worried. I so want this to work! Last loading dose is on the 30th.
Read on one medical site that a medical bracelet or necklace should be worn. Listing meds I guess. Anyone on here wear one? Would never think I needed one.

You are right, it's still early. It took me a good 6 months to really tell a difference when I was put on Remicade for crohns. I never got a bracelet or anything like that.

I have a medication list that I carry at all times, including the medications I am allergic to, my husband also has a copy of my list. He is on a lot of heart meds, diabetes & a pacemaker, so I have a copy of his info too.

Take good care of yourself.

Hey I poop,
Didn’t know you can take Remicade as needed. Thought it was an ongoing med as long as it was working.

I think when ipoop updated his sig he forgot to remove "as needed". That was probably for enemas.

Remicade is an ongoing med that you will be on for many many years ... as long as it keeps working.

I was under the impression that the med alert bracelets were for people who have life threatening conditions -- like insulin dependent diabetes, or organ transplant patients. But I could be entirely wrong. My docs never mentioned that I should have one for biologics.

I was on high doses of pred when I started remi, but by the end of my loading doses I had definite improvement. I had my first test for antibodies right before my 1st maintenance dose at my request (my doc said it was early for the test, but did it anyway) because I was off pred and still had lingering symptoms -- stool wasn't always fully formed, occasional blood and about 4-5 bms/day. Even with these symptoms I was so far from when I started I was willing to give it more time, but I wanted to make sure I didn't have antibodies (I had antibodies to Humira). The test showed no antibodies and the levels were on the low end of normal so he increased my dosage. That helped but I would start getting more symptoms a couple weeks before my infusion, so we went to 6 weeks, That still didn't get me completely there so we went to 4 weeks before giving up on it and that finally got me to complete remission,

As long as you are doing better don't give up on it. For some people it works really fast, but for me it it was a long slow process.

She’s still on remicade. She meant that instead of giving up on remicade completely, they went to 4 week infusions and that worked for her. 😀

Hi Faithmac,

Like CCinPA, I've been tinkering with the remicade dose for about a year now. There's definitely been improvement since first starting, but its a really slow progression. I feel like I take 1 step forward and 3 steps back. (Now on 10mg/kg every 4 weeks) Like you though, its been recommended that maybe its best if I get my colon removed, but I'm not ready to give up either.

I'm still on 7.5mg of pred, hydrocort enema's, and 150mg of imuran. I just started this new dose a couple weeks ago. I was hoping it would clear remaining symptoms over night, but it hasn't. I currently have about 5-7 bms a day, while far from perfect, way better than when I first started. I'm hoping things continue to improve so I can get off the prednisone and enema's...

I hope you see improvement soon!

Saw my Doctor yesterday. Wanted to know why I’m having a blood test right before the third loading dose. He moves pretty fast with dosing. He wants to know my levels so he can either move my infusions up or increase the dosage. Better this way instead of waiting and suffering . He actually bumped my Entyvio from 8 weeks to 4 within a few months of taking it. Big difference with that change.
I’m doing a little better then from when I started Remi but not close to remission by any means.

Sara,
Definitely not in remission or anywhere near.
Hope this starts doing something!

It sure does. Was feeling a little better the first couple of weeks after infusion. Next week I have blood taken and third loading.
If the levels aren’t good maybe he’ll change things

Thanks Clo!
Wish it was next week . Try not to complain too much especially to my husband. I sound like a broken record. Really have not felt good for quite some time. Trying to stay positive. Never ending battle.

Faith

Straydog,

I know just tired of complaining and not feeling good. Was working before my accident. At least that kept my mind off all of this. I would make a terrible Massage Therapist these days. Bad energy!

Faith