Has anyone been on Remicade for a long time?

[EthanPSU]

I just started remicade since asocal is not working that well. I had my 1st infussion 2 weeks ago and going for my 2nd in 3 days.

I have a few question with it...

Right now I am taking asocal on top of it. Will I eventually not need to take the pills anymore and remicade will be all that I need?

And another, How bad are the side-affects of remicade? I heard it severly reduced your immune system which can cause you to get lots of infections. How true is this?

 

[Starlight]

I have been in remicade for 4 years. I am off all meds except one( cant remember how to spell the name, hard name to spell) I'm on for reflux, and I was just put on that a month ago. For a little over 4 years, remicade has been the only medicine I have been on.( for the crohns)

It effects everyone differently, when I first started, I would get headaches after the infusion. I don't get these as much anymore. The main side effects for Me is that it wipes me out. Especially the day of the infusion. I usually sleep the rest of the day. Also I find I get leg cramps( feels like I worked out for a long time, only way to describe it) the day of the infusion, but this is gone by the next day. I'm usually pretty tired for a day or two after and sometimes I get a little nausiated, and lightheaded, but not bad. Its very tolerable. My biggest side effect is being tired.

As for effecting the immune system, I have not had to many problems but you do have to be more careful. I wash my hands ALL the time. Always did anyway. You can get infections more easy, and it can take you longer to recover from infections.

I really hope remicade works for you! It has been my miracle drug! Bring a good book, iPod, or anything you want to help past the time during the infusion. I have come to somewhat enjoy my infusions. It's a day off of work, and time to just sit around and basically do nothing.

 

[EthanPSU]

It's a day off of work, and time to just sit around and basically do nothing.

Ha, that is my main excitment as well. Summer work kills and a day off is nice.

And I hope I get off my pills in the future...I am very bad at remembering them so not having to take them would help alot. Not to mention not having to buy them...Asocal is expensive.

 

[Absentminded]

Hi,
I haven't been on remicade for long, I'm having my 5th infusion the week after next, but since starting I've been able to come off all my medication. That's Azathioprine, asacol and the dreaded steroids.

It has been my miracle drug too. I'm eating mostly what I want, I'm finally only having 2 or 3 bms a day, rather than 10-15 and most importantly my crp is down to 1.4!

With regard the immune system, I haven't hadcany problems with the remicade. The azathioprine screwed up my white blood count recently, suddenly after taking it for almost a year, but that's back to normal now I've stopped it. Like starlight said, you just need to be careful.

I really hope you get good results from it! It's been amazing for me.

Lucinda

 

[Majikn]

I had this weird thing with Remicade where I would develop eczema between my toes. That one grew to like, the entire front of my foot before I did something about it. A dermatologist fixed me up with some creams and they're gone. It started to happen again when I switched to Humira, actually. I still had some cream from all those years ago. I put it on and it's gone again.

 

[Becky]

I have been on remicade for 3 yrs. After having my son I had to go back on entocort as well. It was been about 2 yrs. I have no side effects at all.

 

[CrohnsHobo]

I took it for four years before it stopped working. No side effects the entire time.

 

[Manzyb]

I was on remicade for about 6 years. I never had any side effects the whole time. At the very end of taking it I built up antibodies to it and ended up having an allergic reaction to it. Most of the time I was on it, I didn't have to take anything else.

Good luck with it! I loved it :0)

 

[EthanPSU]

Thanks for the responses. And yeah, So far its been working wonders. Ive had no problems and I am going like once or twice a day! I feel like a normal person haha

 

[Claire617]

Ah well I had one infusion... then a couple of minutes into my second infusion I went into shock and couldn't breath, on ANOTHER note I'm sure you'll be fine it lol it was a rare side affect and as most people on here have wrote it worked pretty good for them for a while, so fingers crossed!

 

[EthanPSU]

Wait....you went into shock on your 2nd infussion. Haha, well thanks for making me worried about monday now. I get my 2nd one then

 

[Claire617]

Yeah it was my second, I know I was like hmmm shall I write it haha

na in the rare occasion it happens, once the nurses stop the infusion everything's ok just a lot of rushing about and people fussing over you

 

[EthanPSU]

I know what you mean. I get light headed when giving blood or shots but I know how to deal with it and when I tell a nurse she makes me stay for like an extra 20min when I am perfectly fine.

 

[Manzyb]

Ah well I had one infusion... then a couple of minutes into my second infusion I went into shock and couldn't breath, on ANOTHER note I'm sure you'll be fine it lol it was a rare side affect and as most people on here have wrote it worked pretty good for them for a while, so fingers crossed!

I had the same effect where I couldn't breathe. It was really scary, but mine was after 6 years of taking it, one day it just did that to me. Crazy...

 

[Manzyb]

Ethan, don't worry! You will be fine :0) Try not to stress over the what-ifs. I know it can be really hard with all of the possible scary side effects, but everyone is different.

I think they have to make you wait for a little bit after the infusion to leave just to make sure you don't have any adverse effects. They did that to me all of the time also.

Good luck! It was a wonder drug for me that got me through some really rough times :0)