Remicade: the good and bad

[princess.sparrow]

My doctor is looking to put me on remicade if the current prednisone/ 6-MP / colazal cocktail doesn't kick in soon. I have read a little about it, and honestly I'm more worried than hopeful.

I was wondering if you could provide more details on what it's like to take remicade, how/if it has benefit to you, and what are some of the most common side effects?

Thanks!

 

[rygon]

Try these links

http://www.remicade.com/crohns-disease

http://www.crohnsforum.com/wiki/Remicade

http://www.nacc.org.uk/downloads/factsheets/drugInfliximab.pdf

They also do an information pack. Would be worth asking your GI if they have one you can read

 

[moogie]

Except being tired for a day or so after wards I feel like a normal person.

Remicade is doing what all the other medication failed to do for me. I llove it

 

[Mountaingem]

Not as scary as pred, that's for sure! It works good, not great for me, but has really improved quality of life for me. I almost feel normal!

The side effects I get are a mild rash and even more sensitive to the sun, if that's possible! A little achey and nauseated sometimes.

The scariest side effect that held me up was increased risk of lymphoma, but to put it in perspective, another member here on another thread put it like this: Average person has a 1 in 10,000 chance of getting lymphoma; Remicade users have 3 in 10,000 chance. It seems to happen in young adult men more than women, and almost always in conjunction with 6MP medication taken concurrently with the Remicade. Of course, unchecked inflammation can also cause colon cancer in Crohnnies-which incidentally I've had and beat. As with colon cancer, if you get your labs done on Remicade regularly it can prevent most of the more serious side effects.

I've had some pretty bed side effects from prednisone-fractured hips, osteoporosis, severe ulcers and infections, just to name a few...taking Remicade has been worth it for me.

Let's face it-all of us here need scary drugs to stop a scary disease, unfortunately. Hope this helps you make the best choice for you. Best wishes

 

[tots]

Mountaingem- your right- serious and scary disease takes serious and scary treatments to help us. IBD is not for the faint of heart! You have to be tough and willing to take a leap of faith with the Dr you choose, the tests you have done and the treatments your Dr recomends. We all hope to live as long as we can in remission!!

I believe we can do it- I believe we have a better chance with our "friends" here as no on else can give us the knowledge, support and understanding. Simply because they suffer too!!


Lauren
:rosette2:

 

[[email protected]]

Hello,
I have been a Remicade user for over 2 years and my Crohn's is in remission!

Only side effect now is that I feel lousy 24 hours after the infusion. I take off Friday afternoons and rest all day Saturdays after the infusion. I'm good on Sunday.

 

[Sophos]

Hi hi!
When my doctor told me to think about trying Remicade, I picked up one of their information booklets and was terrified by the long list of side effects. I think i worry more than i should, because i'm doing well. I have only had 2 doses so far, and luckily have only felt tiredness, weakness, sneeziness, sore throat and itchy eyes. I have almost-normal BM's now and my fistulae will hopefully close up later on. I didnt have any allergic reactions, but i am also being protected from them by methotrexate and corticosteroids. From the other people i've talked to at the clinic, most people seem to tolerate it pretty well. As for the possible long term effects like the development of antibodies, I'll have to wait and see what my body decides to do in the long run. Anyway, the best thing is to be prepared with tons of research. I felt far more confident once i knew what it was, what it was supposed to do and what it could do to my body. My doc told me the really serious stuff like lymphoma happens to a very small percentage of people. Try not to sweat it, remicade seems to do a lot more good than it does bad!