Remicade Virgin - in Denial

[FindingLitz]

Hi All, I am 27 and was told by my GI on Monday that it was time to "bite the bullet" and go on a biologic drug. He wants me to start Remicade ASAP. Having been your typical patient will illness denial for the last 6 years, I am trying to cram in as much research as possible. I have been on Asacol (3 different times), Imuran (with another medication to help my body metabolize it correctly), horrible antibiotics (usually a cocktail of two that make me throw up for two weeks), and steroids for 2-6 weeks at a time. Apparently I'm already at Remicade. Can anyone out there help me gain some perspective? I've been reading all types of info online and I just keep getting more and more scared...

1. Is Remicade really like chemo?
2. What are the side effects? Am I really going to throw up, lose my hair and gain weaker/sicker before I get better?
3. Can I use medicinal "herbs" while on it?
4. Do I really have to limit my contact with friends incase they are sick?
5. Do I have to stop eating out incase someone in the kitchen is sick?
6. Should I have my closest friends/family members tested for TB?

I feel like I am over reacting - and my life couldn't REALLY have to change over night. But all this research is really scaring me.

Please help - alone with Crohn's...
Finding Litz

 

[chrisnsteph1022]

Welcome! First, take a deep breath. Don't freak out over Remicade. It's not near as bad as you've apparently been reading. I don't have experience with Remi, but I've read a lot of experiences on here. I start it on Friday.
1. No, it's not like chemo, other than the delivery method. It is an IV infusion.
2. Some people get really tired/fatigued for a day or two after the infusion. I haven't heard of nausea or hair loss being a side effect. It can cause drug-induced lupus, though. That's one I'm worried about myself. I don't see any reason you'd get sicker. Some people see improvement after just one infusion.
3. Are you talking about weed? I don't think that would be a problem.
4. If you know your friends are sick, I'd take precautions. Use hand sanitizer, don't drink after them, etc.
5. I've never heard this one. I don't think you're THAT susceptible to infection. It doesn't wipe out your immune system completely.
6. I don't think this is necessary. If they have symptoms, they may want to get checked for their own health. And stay away while they're sick.

You'll be fine (so will I!). When do you start?

 

[FindingLitz]

Thank you for the quick response - and the vote of confidence. Blame it on the 1.5 hours of sleep I've been able to get since Sunday. I have terrible pain in my joints - my GI thinks my inflammation has reached my bone marrow essentially.

I don't have my first date scheduled yet - they said they would schedule it the day they got my approval back. Good luck - please let me know how it goes!!

 

[SarahAnne]

Hi Litz! Welcome to the forum! There is some scary info out there about Remicade, but like any other drug, people only report when they have problems or bad reactions. For every person who has a bad reaction, there are many, many more who have no problems and have found incredible relief with remicade.

1. Not at all, other than the fact that it has to be administered by IV and it is usually given in an infusion lab where chemo is given as well.
2. The only side effects I've ever had are fatigue the same day I get my infusion, and mild joint pain. I can't completely attribute the fatigue to the Remicade because I get pre-medicated with benadryl and it makes me very sleepy. The joint pain is usually just a mild ache in my knees that is gone by the next morning.
3. I've never had a problem with it reacting to any other medication, herbal or prescription.
4, 5, & 6. No. You're immune system will be suppressed, but like Stephanie said, it's not gone completely. Be nuts about personal hygiene by washing your hands & using sanitizer, especially when coming into contact with frequently touched items (door handles, etc.).

Even before going on immunosuppressants, I rarely got sick (not including the CD). I haven't noticed any difference since going on the remicade. I have two children in elementary school and they have been sick more times this year with colds, etc. than I have. Just take precautions if anyone around you is sick, you can let people know that you are on a drug that suppresses your immune system so that they know to be careful when they are sick. You don't have to avoid people completely.

Good luck!!

 

[Ducey99]

Seems like your questions have been answered quite well already. Gonna add my 0.02$ anyway haha. I was on Remicade for about 2 years and don't think I got sick once (probably not the usual but still..). I drank regularly, and used 'herbal remedies' occassionally with no problems.
To give you some more positive, I started feeling better literally during my first infusion! Had to get my mom to run and get me the first food I had eaten in months.
Needless to say my life changed overnight from Remi, but for the much much better!

 

[moogie]

Yeap Remicade is way better than you have been reading on.

Like any other medication there are always risks. I've had 6 infusions up to now and I would never want to live without the medicine. It's letting me live a normal Well almost normal life.

The only side effect I have is being tired and now it's less than 24 hours.

It's good stuff!!

Let us know how it goes for you!

 

[FindingLitz]

Thank you, all. I've done 2 weeks of 30 MG of Prednisone and 6x Asacol HD's per day... Needless to say, I've been feeling great - and I don't want this feeling to go away... Though it is starting to go the opposite way - and now i can barely go to the bathroom at all. Obviously, Asacol (4th time) isn't the answer!

I go tomorrow to discuss Remicade is complete detail with my doctor -- still scared, but feeling a little better. I have a huge list of questions... hopefully, I come to some peace with this. Just scared...

 

[sawdust]

I go tomorrow to discuss Remicade is complete detail with my doctor -- still scared, but feeling a little better. I have a huge list of questions... hopefully, I come to some peace with this. Just scared...

I would definitely ask these questions with your doctor, and also be sure to include the opposites - understand how your doctor feels will help you and your disease. It doesn't just cause possible side effects, it it supposed to help you most of all! I'm not on it, so I can't really speak to it specifically, but I know that doctors weigh possible side effects against possible good outcomes. It might be good to discuss some of your doc's thoughts on this so you understand each other. Good luck! I hope you get some peace, both in your mind and your gut.

 

[FindingLitz]

My doctor's appointment went very well - better than I could have hoped for. Turns out that Remicade may be a safe drug than Imuran (esp since I don't metabolize it correctly, which could lead to some serious damage..)

My doctor explained how this was no way similar to chemo - and that I would not need to change my lifestyle to allow for the treatment. I live a very active life (when I can) such as exercise, training for marathons, eating out, traveling including planes and trains, throwing parties, going out to eat, etc.

I have a MUCH better outlook and now looking forward to my first treatment. Will let you know how it goes once my insurance approves

 

[moogie]

I am very happy for you

Hurrah

 

[jmlport98]

The only side affect I have with Remicade is back tightness.

 

[FindingLitz]

I am offiically scheduled for Tuesday at 12:30. Here goes nothing!!!

 

[chrisnsteph1022]

Good luck!