First Remicade Infusion tomorrow.

[craiggles08]

Hi all,

Long time reader of the threads, first time posting. Thanks for all the help you all probably never knew you were giving me.

I was diagnosed with Crohns last year after a miserable few months of feeling like my intestines were straight up garbage, losing 40lbs, zero appetite, and a week long hospital stay. Same old song and dance as alot of other people on this forum

Anyways, I was on 6mp.. felt better for a while but have had multiple flareups over the last year even with my dosage as high as it could be. My white blood cell count has now fallen too low. Long story short, 6mp failed.

On to Remicade.. totally sucks and the thought of cancer is kinda gnarly as I'm in my late 20's and in the real danger zone with it while on Remicade but it is what it is.. The success rate of remicade is encouraging.

My first infusion is tomorrow at Beth Israel medical in NYC. Has anyone been there for their infusions? I hate hospitals and any advice on what to expect or how the staff is or anything would be helpful.

Thanks!
-craiggles

 

[muppet]

I think the risk of cancer from untreated Crohn's is pretty similar to the risk of cancer from Remicade, but I don't know the numbers off hand. In any case, Untreated Crohn's will kill you a lot faster than hypothetical cancer will... ;-)

Hospitals aren't so bad. I grew up in them. I actually feel a little TOO comfortable in hospitals sometimes. Try to look at it with new eyes and make the best of it. Most likely, Remicade is going to make you feel awesome compared to how you feel now, and you'll look forward to your next infusion when your last starts to wear off.

Keep a close eye out for side effects, even if you're sure they're not from the Remicade, write them down, date them, and take notes on their progress. Remicade is a great treatment for most, and those who do have a bad reaction normally have it soon, but some have slow, odd reactions and those are the ones to look out for mostly. Be vigilant and keep a positive outlook. The overwhelming likelihood is that it's gonna help you a lot.

 

[moogie]

Welcome to the club. Remicade is not so bad. been on it for a long time and it's making this plague bearable. Only side effect i have is tiredness that lasts about 24 hours. I go to a private clinic with very cute nurses and i am treated like a king there. it's all cool stuff.

if we could just convince the owner that a 50 inch lcd screen would be good for us patience LOL

Seriously remi made my life 100% better go for it and enjoy. oh and it took until my 4th infusion before it kicked in.

 

[tots]

Sadly this disease is scary no matter what you do. All the meds will make you lose sleep every night if you read all the material. Not treating Crohns is painfull and and can also be deadly. Whats a patient to do? Just the very best we can.... hopefully using this site
will help us make some of those hard choices.

Lauren

 

[LonghornGirl]

I just wanted to see if you come back to tell us how it went. Good luck, I hope you see positive results for this soon.
I'm starting my first treatment session this Friday, so I have the same concerns and anxiety that you probably have.

 

[rygon]

im on remicade and the help its given me (im 29) is well worth the risk. I'd rather live now than be how I was before taking it. Just dont expect to get better after a couple of doses, it may take 6 or so before feeling better. Good luck