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Starting remicade :/

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Crohn's Disease
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Posted 7/12/2011 1:16 PM (GMT 0)
Hi! My husband was recently diagnosed with crohns. Both of his drs have suggested remicade for treatment. At first they put him on the 6mp but he had very bad rectal bleeding and severe abdominal pain in reaction to that so they just have him on mesalamine and budesonide as of now. He was supposed to start his first infusion of remicade this morning but the appointment got canceled bc the nurse was sick.
I posted about it on fb so that our family back home would know what was going on. (we are in Va they are in CA) My father in law messaged me saying that he thinks its a horrible idea to be on the remicade and we need to get another opinion. The reason being is that my MIL also had crohn's. She took Remicade when it first came out but only for a very short time from my understanding> the family believes that it is what caused her to be so sick and ended up killing her. Towards the end she was severely sick all the time with pneumonia and other infections. They believe it was caused by the remicade bc it effected her immune system.

When the drs first suggested that my husband had to get on remicade, he flat out refused, but we talked to the drs and did some research and it now seems like a good idea. But after talking to my FIL this morning, I'm second guessing it. I'm scared to death of losing my husband from this treatment. I couldn't handle that at all. He is my whole world. I don't know what to think now. Do we want remicade? Is there something less harmful we haven't tried yet? Are the drs sure this is the best thing? Is it any better than it was 10 years ago? Is this going to kill my husband????????
PLEASE! if you have had GOOD OR BAD reactions to this, let me know. I need advice so much right now! We have only been on a treatment plan since January. Is it too soon????? Thank you in advance for the support/ advice!
Posted 7/12/2011 2:19 PM (GMT 0)
I had the same deal as your hubby, and so far the bleeding has stopped and i've had more good days than bad( mind you i still have baaad days) My only complaint right now is a darn rash i have on my face. But the remi has done it's job and i am sooooo thankful for it. The nurses arew great, they check you through the whole infusion and keep you there and hour after just to keep an eye on you.
I hope it works for him as well as it has for me. I go for my 6th(or 7th) infusion in aug.
My advice though, is stay out of the sun( me thinks that is what is causing my rash, being on remi and sitting in the sun)
Good luch and keep in touch!
Posted 7/12/2011 2:45 PM (GMT 0)
I have been on Remicade for almost 3 years, and have not noticed any major changes in the number of illnesses I have. I do take precautions after my infusion to make sure that I'm not around any major sick people. I notice that I am a little fatigued for a day or two after my treatments. This medication has been my wonder drug. I started it about 6 months into my first major flare. I had an infusion port put into my chest about 2 years ago, just because of this medication. The nurses were always having a very difficult time getting an IV started and seemed really surprised that I didn't already have a port in place.

I'm sure that the medication has gone through some changes since it was first introduced in 1998. I know that the drug carries some major possible side effects, but when I compare those side effects (most of which are rare) with what my 2008 flare was like, for me the drug is soooooo worth it. I recommend looking into the Remistart Program (Assistance for infusion cost). You can print the application from a website and have your doctor complete a section.

Hope this helps. This group of people on this board are always really good at helping with information and listening when we just need to vent.

Posted 7/12/2011 7:24 PM (GMT 0)
You have nothing to worry about. i have been on remicade for 2 years now and my CD is in remission. just had a colonoscopy last month, and there were no signs of active Crohns. Now, i stay away from kids and people who have kids, and people with colds. I live with a sanitizer gel in my pocket, I avoid busy malls and supermarkets, I shop off hours, and if I am in public and hear someone sneeze, i leave immediately to another aisle. I haven't had any colds since I've been on it. Now, washing hands and carrying a sanitzer and wiping down your counters and door handles once a week to keep germs to a minimum is the key. And if you have visitors, and it's cold season, make sure you advise them if anyone has a remote sign of a cold, they can't come over! My brother came over at Christmas and was told that, and he still showed up with a cold! What a lack of respect! But Remicade for me is a terrific drug, your husband will feel much better and be able to eat more of the forbidden foods, give it time. He will be feeling better shortly after starting it. I had all your concerns, but Remicade has been a wonder drug for me. I have had 4 surgeries and resections and Imuran no longer was working. Good luck, God bless.

Sandra

Posted 7/13/2011 5:54 AM (GMT 0)
I go in for my 6th infusion next week. Remicade has done me a world of good! I was able to cancel surgery for a fistula and a fissure! I too have a rash on my face, possibly from the Remicade?
I am fatigued for the day(sometimes 2 days) after an infusion and i also take extra precautions to avoid places where I feel the infection risk is higher. Hand sanitizer is my constant companion.
I would recommend Remicade. My rhuemotologist also added methotrexate, I wish I could remember the reason he liked the combo. :-/
OH! I can eat almost all of the foods that formally were triggers! :-D
I even had popcorn with my granddaughter last week!!! :-)
I hope that if he tries it it works as well for him.
Posted 7/13/2011 1:59 PM (GMT 0)
My husband was deathly ill in the hospital in 2008, and remicade saved him. He's had some bumps along the road since then, but nothing like what landed him in the hospital (c-diff and crohn's).

Remicade is a scary drug, but when it works for you, it gives you your life back. My husband and I now lead a pretty normal life, and have a good quality of life. This is all thanks to Remicade. I'm pretty sure without the remicade, my husband would have had surgery to remove parts of his colon, and probably be dealing with a bag, right now, and any complications of surgery.

My husband was recently bumped up to 10mgs/kg dosage of remicade (up from the usual 5mg/kg). This has not seemed to affect his adversely. He hasn't suffered from any opportunistic infections - in fact, he is mostly healthier than me, except for having this specter of crohn's loom over his head like an ugly shadow.

Everyone does differently with medications. Once you start remicade, if you stop it, your body can build up antibodies to it, so you cannot restart taking remicade after a break from it without risk. I suggest you talk to your doc about humira or cimzia, and see if he can get on these. If this helps him, he can stay on humira or cimzia until it stops working for him, and use remicade when he knows that he does ok with anti-tnf agents in general.

(((Hugs))). Scary time I know. Hang in there, hopefully you'll begin treatment and your hubby will bounce right back.

PV
Posted 7/19/2011 11:56 PM (GMT 0)
Thank you all so much for the reassurances! It does help! He had his first treatment last week, and it went great. No side effects, not even tiredness! Now we have an appointment with his dr this Friday to try and get treatment set up at Ft. Gordon, Ga. Hopefully he wont refuse! fingers crossed!
Posted 7/20/2011 6:37 PM (GMT 0)
It seems now dual and/or monotherapy with Imuran/6-MP or Methotrexate is the way GI's are going, with the exception of insurance in North America.

I posted an article if you would like to read about stats and Biologic drugs. In a nutshell here are some stats.

Your chances of contracting cancer from Biologics goes up from 0.02% to 0.06%. It's extremely rare, but they have to put it on the warnings just in case.

You'd have a better chance choking to death on your toothbrush than anything else. lol
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