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Remicade & 6MP - OH MY!!

Hi All,

so the docs want to start me on Remicade as a buffer until the 6MP kicks in, which they want to start me on as well. Currently on Lialda & entocort which dont seem to be getting rid of my inflammation (poos are still not right & i still have occasional tummy cramps)
Any one else totally freaked about all the drugs & possible long term affects
I am only 29 so i still have a lot of life ahead of me!
I am a runner (1/2 marathons, was hoping to do my first full this year but my docs ruined that dream for me), what if all these drugs make me too tired to run long distances or my joints become irritated so i cant run. Running is one of the few things that makes feel good these days (mostly mentally, i think it would be pretty tough if i had to deal with not being physically capable of running)
I live in NYC & all these drugs mess with your immune system..........do u have any idea how many germs are on the subway at rush hour???? there is no avoiding them!!! Will i just be sick all the time, ie, with the common cold or something similar???

I have been a little bit of denial trying to convince myself i dont really need all these drugs. Reading all the stuff about controlling your disease with diet only feed into my denial!!

Just wanted to put my fears out there - anyone have experiences with these drugs that may help me feel better or worse???
 
Remicade threw me straight into remission. I always say its worth a shot... It's really not as bad as it sounds and made me feel great the next day. However, not everyone will have those same results.
 
Maybe check out LDN if you go to the search portion of the forum search for LDN and you will find a wealth of info on it. It may be exactly what you need. Kev and Katiesue are currently taking it and each have diaries of how it has affected them. If not I'm on Remicade and I was on 6mp but was taken off of it as it did nothing for me. Rem put me into remission almost immediately but the doctors put me on it too soon when I had an infection. Best of luck
 

My Butt Hurts

Squeals-a-lot!
Hi and welcome!
I can totally see your fears, because I had the same fears just before I started Humira (similar to Remicade). I was most worried about the possible lymphoma side effect, when someone on here calmed my fears. They said that even some people on the placebo ended up with lymphoma, so it wasn't necesserily caused by Humira. I am a school teacher, and talk about germs! I was fine most of the winter, just one cold if I can remember correctly. Wash your hands a lot. I used to hate taking meds, but now I would rather take 40 pills a day and feel better than feel like crap.
Humira sent me into a great remission for 4 months, but now I'm trying to feel crappy again. I guess I'm going to look into something else.
Anyways - good luck.
 
Thanks all - it is definitely reassuring to hear you guys are not having the effects that i would have suspected from a drug that suppresses your immune system..........The doc called in my prescription to the pharmacy for 6MP today - i guess ill pick it up on my way home tonight - still totally scared though
Im sure ill stare at the bottle for hours before i actually take it....:)
 
CDStinks said:
Hi All,

so the docs want to start me on Remicade as a buffer until the 6MP kicks in, which they want to start me on as well. Currently on Lialda & entocort which dont seem to be getting rid of my inflammation (poos are still not right & i still have occasional tummy cramps)
Any one else totally freaked about all the drugs & possible long term affects
I am only 29 so i still have a lot of life ahead of me!
I am a runner (1/2 marathons, was hoping to do my first full this year but my docs ruined that dream for me), what if all these drugs make me too tired to run long distances or my joints become irritated so i cant run. Running is one of the few things that makes feel good these days (mostly mentally, i think it would be pretty tough if i had to deal with not being physically capable of running)
I live in NYC & all these drugs mess with your immune system..........do u have any idea how many germs are on the subway at rush hour???? there is no avoiding them!!! Will i just be sick all the time, ie, with the common cold or something similar???

I have been a little bit of denial trying to convince myself i dont really need all these drugs. Reading all the stuff about controlling your disease with diet only feed into my denial!!

Just wanted to put my fears out there - anyone have experiences with these drugs that may help me feel better or worse???
I understand but disagree. Keep in might that the really horrible side-effects are EXTREMELY RARE.

My philosophy about remicade is that ill rather live a full and free life now and take the (possible) side-effects later.

And yes, Remicade worked like a miracle for me. 24 hours after my first infusion I was completely symptom free.

I say go for it.
 
Hey CDstinks (and how, by the way),

I wanted to share my experience since it is similar. I was diagnosed at 13 (12 years ago) and I was put on 6MP right away, with Prednisone and Asacol. I was also a serious competitive swimmer who trained about 25-30 hours a week. Boy did that first flare get in the way. But after awhile, I went into remission and started training and swimming fast again. I didn't have another serious flare until about a year and a half ago. Now I've been switched to Remicaide since my doc decided the rest wasn't working anymore. I guess the main thing I'm trying to say is...your dream isn't dead. It may be somewhat delayed, but its not gone. Just be patient and let your body guide you, the Crohn's may never go away but your life doesn't either.

Your fears are completely reasonable, but just remember...all those side effects are relatively rare. If 6mp or Remicaide was really causing tons of lymphoma in 29 year old crohns patients...i have a feeling it would be shelved. ;) Plus...the medicines your doc is putting you on now is not etched in stone. If you have severe side-effects, then you'll change them (they can't really be seen as working if you can't live your life).

With regards to the fear of catching everything...I do think that I had some problems with that (when I was living in a college dorm...seriously, its like an incubator). But then again, all my friends got more colds and stuff then they had before, so maybe it was just "college". But lastly...being on an immunosuppresant does not mean that you have to live in a bubble. You can go on the train...you don't have to change your life. Get a flu vacine. Wash your hands more often, that sort of thing. :) Basically, if they say that old people and children should do it, you should do it too!

Okay, hopes this help. DOn't know if everyone on the board agrees with me, but thats my two cents.

Don't worry...things will look up. And until then, everyone on this board has a kind and understanding ear.
 
N

NCWaves

Guest
I totally agree 100% with the things ErinDF has to say to you.
You know also, I hear this alot, but people with crohns tend to get less colds and bugs, because its our rev'd up/screwed up immune systems that are helping and hurting us at the same time. I think if you just use common sense and be conscience of your personal hygeine you should be a.o.k.
Good luck to you!
 
J

james

Guest
i just started taking 6-mp about 2 weeks ago. i havent noticed it doing anything yet but i will say its been giving me some acne which i havent had since i was 16 so i know its the meds. I too was scared to take 6-mp but i would flare a couple times a year and need high doses of prednisone. At the time i would rather take prednisone but now that ive researched prednisone, that scares me more. If you take enough pednisone you pretty much guarantee side effects. The 6-mp can also be stopped if you have undesirable side effects. Ive also found that a good person to talk to is your pharmacist, mine was very helpfull and knowledgable about 6-mp, they could probably ease some of your worries.
 
just a note for people, 6MP and Remicade Do not CAUSE Lymphoma, it cuases people with the underlying Lymphoma to become ACTIVE. There is a huge difference here, just like Remicade and TB, it doesn't cause TB, it just causes the dormant TB already in your lungs to go wild.

hope everyone is doing well and symptom free!!!
 
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