Remicade, new to Crohn's questions

[jild783]

Hi all,
I was diagnosed with Crohn's in October 2011. I was taking Entocort and Pentasa, which helped reduce my initial inflammation. I am now just taking the Pentasa, and my inflammation is back again. My doctor said that Entocort wasn't for long-term use and he strongly suggests I start Remicade.

I'm reading about it online and it seems that the drug can cause some serious conditions... fatal infections and cancer. Has anyone that's taken/taking Remicade experienced any of this? What about any side effects? What can I expect in general?

Also, since I'm new to this disease, do people with Crohn's have full-time jobs? I work, but it seems like a few days every month I have to take off, leave early, or come in late b/c of pain/nausea/bathroom issues. My boss is very understanding, but it would be nice to go a while without having to do this.

Thanks for any advice!

 

[Inwe]

I was on Remicade and those rare side effects aren't much to worry about in my opinion. I was terrified of the cancer one so I talked to my GP. She basically told me that I had a higher chance of dying in a car crash than die of cancer. You really have to look at the pros versus the cons. Yes, there are some terrible side effects, but they're pretty rare. I wouldn't worry about the infections much either, as long as you watch for symptoms of infections and seek medical attention, you should be fine.

The side effects tend to happen as you're getting the injections or just after and tend to be mild. A lot of people have headaches and feel very tired for example. The one side effect to watch for is allergic reactions/injection reactions and it's pretty hard to miss those symptoms.I experienced reactions, first I got REALLY cold, then super hot. Then I instantly couldn't breathe and my face felt like it was on ffiiirreee and my head was going to explode. I was having allergic reactions. They gave me a push of benadryl, put me on the oxygen mask, and stopped the infusion. It only took a minute to feel better again. But just because you have allergic reactions at first doesn't mean you automatically have to stop the remicade. Your GP will try different allergy medicines, slow down infusion times, etc, etc. My reactions kept getting worse however so I had to stop.

I'm on Humira now, which is almost the same thing as Remicade, but instead of mouse protein, it has human protein. I am also on a high dose of methotrexate (another drug that causes immune supression). I've never experienced any sort of horrible side effect.

I'm not going to lie, it can be somewhat challenging to work full-time if your symptoms aren't under control. I've dropped out of university three times. It sucks but there isn't much you can do about it. When you're sick, you're sick. But once you're stable you can do anything I have two cousins with Crohn's Disease and they both work full-time and are ok.

I hope my rambling made you feel a bit better. Remember to take these drug effects with a grain of salt. I mean, have you ever looked at the side effects of the Pill or even things like asprin? All in perspective.

 

[tots]

I am starting Remicade soon. I just dont have time in my life to be sick!!

I hope it goes well for you should you try Remicade.

Lauren

 

[jild783]

Thank you so much, Inwe. You gave me the answers I was looking for and made me feel a lot better! My doc did talk to me about Humira, but decided I would try Remicade first. I'll try anything at this point!

I hope the Remicade works for you, Lauren!

 

[CrohnsMomFreakinOut]

I am new here so please bare with me...
My son 18yrs of age was diagnosed in 2010-He was also on the Pentasa boat-Took enticort then prednisone to control his first major flair. He stayed on the Pentasa but it did not seem to help at all.
He has a new doc & has had a new colonoscopy/endoscope-ct scan-tons of blood tests & stool sample entrys lol-His new doc has found disease in the large & small bowel-A polup-ulcers and a fistula forming. His illium was almost completly closed.
He is on -Imura and is scheduled to start Remicade Monday
I am really worried about it-He is suppose to grdauate next Thursday-It would kill him if he couldnt walk.
Can anyone please let me know what he can expect-I am worried about the hepatosplenic T-cell lymphomas-Although its rare it is fatal in young adult Crohns patience.
Any info would be greatly appreciated

 

[Johnnysmom]

I think you should be informed about Remicade because the side effects can be serious but it is very safely taken by many. My question is why your Dr. has possibly skipped over 6mp? It is in-between a Pentasa and a Remicade as far as side effects and effectiveness in treating crohn's. Did your Dr. mention this medication to you?

 

[jild783]

I will talk to my doctor about the side effects and what to expect from it. I was wondering if anyone on this forum has experienced the more serious conditions (or knows anyone that has) from taking Remicade. No, my dr. didn't mention 6mp. Maybe I'll ask him about it next time.

 

[Coltyn'sfamily]

To CrohnsMomFreakinOut...
I'm new too. Your question is the same I have. I'm worried about the HSTCL too. They want to start him on Humira. He's had the remicade and made anti-bodies, developed drug induced Lupus and RA, with his weird and quick reaction to it, we're skeptical to start the Humira. Especially because he's a young male and that's who seemed to be targeted for HSTCL.

Does ANYONE out there know anything about it??? Please HELP!

Thank you!

 

[CrohnsMomFreakinOut]

I think you should be informed about Remicade because the side effects can be serious but it is very safely taken by many. My question is why your Dr. has possibly skipped over 6mp? It is in-between a Pentasa and a Remicade as far as side effects and effectiveness in treating crohn's. Did your Dr. mention this medication to you?

All I can think is that the diseased bowel was pretty extensive and there is a fistula forming-He did say the remicade should stop the formation of the fistula...I am really not sure :/

 

[CrohnsMomFreakinOut]

To CrohnsMomFreakinOut...
I'm new too. Your question is the same I have. I'm worried about the HSTCL too. They want to start him on Humira. He's had the remicade and made anti-bodies, developed drug induced Lupus and RA, with his weird and quick reaction to it, we're skeptical to start the Humira. Especially because he's a young male and that's who seemed to be targeted for HSTCL.

Does ANYONE out there know anything about it??? Please HELP!

Thank you!

That is why I crohnsmomfreakinout-I cant wait to be crohnsmomchilllingout lol-My son is a young male-I am worried about the hepatosplenic T-cell lymphomas as it is fatel.
I am really sorry about the Lupus & RA-
I have tried to read all I can but some of it is so confusing
The remicade is mouse protein & the humara is human-I have heard that the humara has fewer side effects

 

[Coltyn'sfamily]

I heard that too. But the risk of HSTCL is higher with the humira from what i understand. Its also not FDA approved for children. Coltyn is only 12.But hes they size of a nine yr old so thats the age we go by. (growth Failure) Its so scary, all of it! I feel like I'm playing God sometimes and I hate this!

 

[CrohnsMomFreakinOut]

I heard that too. But the risk of HSTCL is higher with the humira from what i understand. Its also not FDA approved for children. Coltyn is only 12.But hes they size of a nine yr old so thats the age we go by. (growth Failure) Its so scary, all of it! I feel like I'm playing God sometimes and I hate this!

Wow-I did not know that... I agree completely-Its like you might as well flip a quarter-If he doesnt start aggressive treatment soon he will end up in surgery-If we do start him on it it could result in terrable reactions including cancer...Jeez :/
Sorry about the growth failure-Jake is 5'9 & right now weighs under 130lbs
I am worried about bone density etc...
What did they say about the RA? I heard it was pretty rough stuff

 

[Coltyn'sfamily]

They said RA is just another immune disease. It seems like if you have one you have another! It attacks your joints. We see an RA specialist in June. They are hard to get into at our hospital. He mainly just has pain and we just watch it come and go. If it lasts too long we give him some Oxycontin and wait. That's the worst part of these diseases. You just have to sit there and watch him go thru the pain, as a mom that's heart wrenching!
My daughter turns 10 on saturday and is about an inch taller and 5lbs heavier. Coltyn is 4' and 67lbs. He turned 12 Feb 29th.

 

[CrohnsMomFreakinOut]

They said RA is just another immune disease. It seems like if you have one you have another! It attacks your joints. We see an RA specialist in June. They are hard to get into at our hospital. He mainly just has pain and we just watch it come and go. If it lasts too long we give him some Oxycontin and wait. That's the worst part of these diseases. You just have to sit there and watch him go thru the pain, as a mom that's heart wrenching!
My daughter turns 10 on saturday and is about an inch taller and 5lbs heavier. Coltyn is 4' and 67lbs. He turned 12 Feb 29th.

My cousin has RA-It is a very painful condition-
I will be thinking of you & your son-I hate that yall have both had to endure this situation