Remicade Vs. Remicade + 6MP

[scopesearch]

hello, i came looking for help on a decision between two paths of medicine.

im pretty young, sixteen, nearly seventeen and i cant decide between two paths of meds. my first flare was when i was still in middleschool, so ive had this for awhile. most recently, i had a flare, and my doctor(s) decided that my previous medicine was not working (Asacol), and so when i had my third colonoscopy (Dec. 1st), they gave me an IV infusion of Remicade. now i am at the fork of the road. i have two options, Remicade by itself or Remicade w/ 6MP. its actually finals week and i really dont have time to do much research on this, and my doctor is rushing me, so i came to the forums in hope of enlightenment.

Currently at the moment i am taking Remicade (next infusion is next tuesday, the 14th. First Infusion was Dec. 1st.) 12 pills of Asacol, Folic Acid, multivitamins and a pro-biotic.

Note: My GI does not know whether i have Ulcerative Colitis or Crohn's. im putting my money on UC though. I should know the next time i get a check up and they finished the experiments or whatnot.

Another Side Note: The Remicade seemed to get rid of my flare too, the symptoms are gone or less frequent now.

 

[Shannon]

Hi Scope! I'm Shannon, I'm also seventeen and I have Crohn's (since middle school as well) - I think you can relate that it sucks to have this at any age I'm sure, but at our age it has its own unique struggles...

I am moving toward Remicade in the next few weeks but have been on 6MP for a while now. 6MP did wonders (took two months to kick in), but it dropped my white blood cell levels and elevated my liver enzymes, so it is no longer a treatment option for me. It is a risk to anyone on this drug, but you may not experience that.

I'd say stay with just the Remicade if it is doing its job! I hope it gets me in remission - I haven't been in remission for over a year. I am now homeschooled.

I'm glad you're symptoms are less to none, and I hope that your next treatment option is the right fit. Feel free to message me!

 

[scopesearch]

Yeah... unfortunately im still in school, i dont even know how college would work out if this problem persists.

wow, why did 6MP cease to work?

i hope remicade works for you like it did me, i had a flare for about a month and after my blood infusion, i swear remicade was working the day right after.

thing is, i cant decide between the two due to the side effects. my doctor informed me that 6MP + Remicade would possibly last longer (due to the fact that 6MP lowers your immune system in hopes that your body wont create antibodies against Remicade) than Remicade alone (which in this case, your body would create antibodies sooner.) thing is, 6MP + Remicade showed 32? cases of some sort of liver cancer within the past 3 years or so. my older brother says its too short of a time period to truely determine if its from 6MP + Remicade though.

I hope your Remicade goes well!

 

[Shannon]

Ugh... I never cease to frighten myself with all the stats out there for long-term effects of our drugs for Crohn's.

Well, I heard too that 6MP can help stop you from developing antibodies against Remicade, so maybe go with it? I can tell you that on 6MP I am profoundly fatigued... I couldn't fold laundry! That's why I started home schooling (this is my senior year, and I am terrified of college because of this disease, it's unpredictable, like you said).

I have heard of increased risk of lymphoma on remi as well so of course there is always that to scare us. Honestly at this point it is choosing the lesser of two evils - and finding out what drug affects you LESS, so you can live MORE.

 

[crazycanuck]

Hey guys as my signature says Im on imuran and remicade. Imuran is a varient of 6mp. The risk I am told is something around 4 or 6 in 10000 of developing lymphoma. Remicade has been amazing and a life saver for me so far and Ive done 3 treatments. I was diagnosed back in 2007 at age 16 as well an Im now in 2nd year university. Uni isnt impossible during a flare and my teachers have been excellent in helping me out except one this year but a quick chat with the doctor fixed that. University is probably easier to deal with crohns than high school, atleast in my opinion. In high school your going everyday so say your sick for a week or maybe 2, that means 5 or 10 missed classes. In university (atleast here) classes are twice a week so a week or 2 missed is only 2 or 4 classes missed. Also everyone of my profs thus far have posted their notes online.

If you guys have any questions about crohns at your age pm me or post on here whatever works and I will try to help in whatever way I can. Ive been there and done it and I know the struggles you guys might face. So best of luck with your cases and take care of yourselves.

 

[scopesearch]

oh wow. so what do you suggest i do then? do you think i should take 6MP + Remicade?

thank you for the offer, i think i may take you up on that. my mom actually wanted to take me out since middle school.

 

[crazycanuck]

You know Im not qualified to answer that. I know the risks with taking the both but in my situation I felt the both will give me the best chance at getting and staying healthy so thats why Im on both. Its a big desicion though and something thats very different for each person.

I found it easiest in school to just tell everybody what was going on although Ill admit it wasnt easy. All my teachers knew and we had an agreement that at any time I was allowed to quietly exit the back no questions asked. My friends and the group I hung out with all knew and it came to a point that me leaving twice a class for the bathroom really wasnt weird to anyone. A guy on here, Go Johnny Go, once told me that a bathroom to us is like an inhaler to asthmatics (sp?) and they arent embarassed to use an inhaler so why should we be embarassed to use a bathroom?

Good luck!

 

[Shannon]

School was so cooperative with me, it's my senior year - and they could not have been more gracious to try and help me graduate. Unfortunately on the 6MP my white blood cell levels are getting dangerously low, so public places are out. I miss it!

 

[crazycanuck]

Ahh Im sorry to hear that. Are they suggesting a change in medication for you then?

 

[Shannon]

They want to move me to Remicade soon, and while it's never fun to take a step up on the med-ladder, I am SICK of 6MP nausea and fatigue. I see you're on Remicade, anything I should expect side-effect wise?

 

[crazycanuck]

I havent had too many side effects. Have some trouble getting to sleep but once Im asleep Im right out and some back aches but both not to bad at all. Good luck with it!

 

[scopesearch]

got my second infusion today. that sucked, i was planning to study/work on stuff for finals (tomorrow till friday) but the benidril made me go to sleep... i came home at nine pm too. six hours...

 

[crazycanuck]

Holy crap 6 hours? Why so long whatd they do? How are you feeling on it any improvements yet?

 

[Shannon]

wow...

 

[scopesearch]

no idea, they just took along time, they didnt start the infusion until four. then they gave me 2 benidril, 2 hypocortizone? (both via IV) and a tablet of tylonol. i was planning to study for finals and stuff while the meds were going in but the benidril knocked me out... and woke up around nine, when it was finished. i hate finals..

i felt improvements the first time they gave it too me. i was on a flare and after my colonoscopy, they gave me the remicade. i can say that by the third day, most my symptoms were gone. by now i have no symptoms at all.

 

[crazycanuck]

Wow thats great news. Sucks for how much time it took but Id have to imagine its worth it now eh?

 

[PrincessPeach]

I'm on 6MP and Remicade and honestly I don't know if either can do it alone. I couldn't get covered for the 6mp for a bit (around 2 weeks) and had a flare... and I was on 6mp before remicade and it maintained me but wouldn't make it better so... I recommend both~ But I guess its up to your doctor~ Also if it is giving you low white blood cell count you can lower the dose by halves~ I was at 2 and now I'm at 1.5 for that problem
I just graduated from my Bachelors of Science and I will say it was a struggle but in University you can sign up with SSDS which is like a service for students with disabilities and they can make it so if you're having a flare you write in a room with fewer people/ bathroom breaks as often as you need without taking time from your exams, etc.
Good luck~