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6MP AKA: If you throw enough at her, maybe something will work :)

Hi! I'm a newbie to this forum but not to Crohns. I was diagnosed 12 years ago but even as a kid had gastro problems. Okay, let me get to the point. My oldest daughter works in immunology... she convinced me 5 years ago to see a top gastro doc in Boston for a (lengthly) consult. He seemed to be "spot on" and sent me to an associate. For about a year, things were status quo, I was managing, continued to scope out all b/r in every store, restaurant I visited and was just getting by. Six months ago, doc adds 6MP to my regime of 8 Pentasa a day. After about 3 weeks, out of nowhere, I contracted bronchial pneumonia. I had this for 6 long, painful weeks as I barked like a dog, had zero energy and was a grump... (and it just sped up the D...)
So, here I am, 6 months later, still on 6MP and, lo and behold, bronchial pneumonia AGAIN...
Both times I've been given a Zpack, but it still takes time for me to regain my strength (and forget about my dignity...)
Today is the last day of my Zpack. Yesteray I went for a complete blood work up (oh, did I forget to mention that the 6MP has been a wee bit compromising to my liver?) The results of the blood work will be in tomorrow, but I have had it w/the 6MP. Doc says there is no correlation between the respiratory illnesses and the 6MP which I find very unusual since I worked with elementary school children for 30 years and never had this. Heck, I hadn't had a cold in about 5 years before going on this.
What are your thoughts? I didn't mean for this to be so long. My gut tells me to chuck the 6MP (we are going away for the first time in 30 years on our first cruise to Alaska... do I want to be sick, heck NO... I have already booked a zip line excursion :)
Any suggestions are most appreciated. My daughter is a Humira supporter and it saddens me to see how worred she is about me. I told her that I needed a break from the 6MP (and she agrees) and that we'd revisit Humira in a few months. The doc would like me on Humira as well but agrees that since we will be away for a while now isn't the best time to start it... (about the only thing we agree on...) While I love and trust my doc, I think that he isn't really listening.


Hi and welcome!

You know your body best and you have the right to refuse treatments. Does the 6MP help control your Crohns? If yes, do you want to give that up in order to regain bronchial health?

LOTS of germs on a cruise ship so anything that compromises your immune system is something to give serious thought to. Just be really careful to wash your hands like crazy and carry Purell around with you!

I hope you find something that works. We have a Humira thread over in the treatment section where you can read others' experiences.

Have fun on the cruise and good luck on the zip line!!

- Amy
Thanks, Amy... I wish I could say that the 6MP was helping, but it has made no difference whatsoever!!!
I'm very concerned about the cruise ship and will be washing my hands, using antibacterial, etc, which is something I am quite used to doing (I don't even get on elevators for that reason, but need the exercise, anyway :)
I plan on doing the Walk along with a Team consisting of my daughters and nieces. What a great cause.
Thanks for the heads up on the Humira. I'll check that out. So glad I found this site and for people like you who tell it like it is and who also put this disease in perspective. Life could be a lot worse.
I agree with Amy. Whether or not the Imuran is directly causing your bronchial infections or not it certainly isn't doing anything beneficial to outweigh the annoyances!

It must be frustrating to feel like your doc isn't listening to you, but I agree with Amy again. You have the right to refuse any medications. I do agree with the doc that switching medications right before a trip is probably not the best idea. So, I guess, try your best to continue your routine in avoiding germies. If anyone around you is couching or sneezing, get the heck outta there! Haha.

I know it's vacation, but maybe stay away from any food items you've not tried before, to lessen any negative consequences that may happen. Stay away from any raw food or foods that aren't cooked well done. Other than that, I hope you can enjoy your vacation. :)

Then when you are home, you could discuss potentially going on Humira with your doc. And, even if he is a good doc, if he's not willing to listen to you then time to chuck him and find a doc who will listen!

I am a big advocate of Humira. I started it February of last year and it's helped me tremendously. I am also on Imuran because my inflammation was stubborn, but everything has been under control now for the past year! Hoping you find the right medications for you soon. :)
Thanks Marisa for your feedback. I am usually the type who just "goes w/the flow" but this time I feel that the 6MP (mercaptopurine) isn't helping at all. "Overboard" it goes.
I totally agree that starting a new med before a vacation is not the route to take but also feel that I have been one of the people who has reacted adversely to the 6MP. I'll keep taking my Pentasa (was on Asacol, but this new doc changed me to the Pentasa and it definitely made a difference!)
As far as food, I am a picky eater. Not cooked, not eaten... looks icky, no way... my friends chuckle when we go out to eat b/c it is same 'ole, same 'ole, broiled chicken w/baked potato and a veggie.
I see that you were recently diagnosed. My thoughts are with you. I can tell you that, in a pinch, Starbucks always lets you use their bathrooms.
Great forum, thanks for your input. Oh, boy, I needed this feedback from you and Amy! A thousand thanks!
Yeah...I wouldn't be surprised if it was an adverse reaction. :) Some people just can't tolerate it! I am lucky that I was one of the few who was able to tolerate its sister medicine, haha.

I think it pays to be a picky eater when you have Crohn's ;) So, if it ain't broke, don't fix it!

I used to work at Starbucks, by the way...haha. I actually don't deal with the urgency issue. When I'm flaring I actually have the opposite problem! But, yes...Starbucks is very good at providing restroom access. ;)

Glad you found some good advice and the forum! It's a great group of people here. :)


Hiya micjac
and welcome

I couldn't tolerate mercap or aza neither, I felt worse! So I binned them.
Been on Pentasa ever since.
Humira has been offered to me too, but I'm waiting for a bit longer, or until I'm at death's door again!
Have fun on your cruise, I went on a Med one years ago, I loved it.
Glad you're here, loads of friends for you.
lotsa luv
Joan xxx
Hi Joan!
Thanks for your feedback. There is an irony to the end of this story... 2 days after having my blood work (and 2 days after following quitting 6-MP) my doc called with my results. Turns out that not only was my WBC extremely low but that my liver levels were becoming quite compromised. His response: "I think it best for you to come off of the 6-MP." I didn't even tell him I already had :)
I'm holding off on the Humira until, I, too, am @ death's door. I am sticking to the Pentasa, continuing to have a good attitude (and scoping out all the b'rooms when I'm at an unfamiliar place,) and trying to get some of my strength back.
When I was first diagnosed, docs would load me w/Prednisone (aka: Moon Face drug.) It got to the point where I had to leave work b/c I couldn't bend my arms and finally, couldn't walk... FINALLY the docs agreed that it wasn't for me.
So, onward I go. I am looking forward to our first cruise, will be vigilant about keeping my hands clean and not eating anything not cooked. We have booked excursions and the one that I'm looking forward to the most is the zip line. Doc told me to take Imodium the night before that excursion...
Thanks, SOOO much for answering my thread. I am thrilled to on here and it feels so good (and a sense of relief) to be able to "openly" discuss these issues with others.
P.S: How do I add what meds I'm on and the cute little pics?


Hi Jan - sorry your bloodwork came back so poor but glad you have a "thumbs up" for quitting the 6MP, even tho you already had!!!

Zip line - dark pants and maybe even adult undergarments might be in order! Have fun!

- Amy

PS Under User CP, you can add a "signature" where you can list your meds and history and upload a profile pic/avatar.
Thanks, Amy (again :)
Oh, definitely dark pants (are there any others??? Seems I live in jeans/black pants, lol)
Good luck on your walk. My family are all walking on June 4th (Boston's date.) I'm so glad that this cause is receiving more public awareness.
I am glad to see that you are not on 6mp any longer. I was on 6mp and found out the hard way how dangerous of a drug it is when i became Neutrapenic, No WBC, Red blood cells or plasma, severe bleeding. I ended up having 9 blood transfusions, ten days in the hospital and at one point all my family was summons to the hospital because the Dr's did not think i was gonna make it through the night. Obviously i did make it. Come to find out i was on too high of a dose of the 6mp.This medication should be followed up with periodic blood work. Don't get me wrong this drug has been a life saver for many of people both crohn's and Cancer sufferer's alike however there are many other's like myself who do not Metabolize(sp) this medication well. I have been on Humira since last june and it has been managing my crohns well. Good luck with your trip and hopefully when you get back consult with your Dr about the possibility of getting on the Humira.



Thanks, Amy (again :)
Oh, definitely dark pants (are there any others??? Seems I live in jeans/black pants, lol)
Good luck on your walk. My family are all walking on June 4th (Boston's date.) I'm so glad that this cause is receiving more public awareness.
Two years ago I got a couple pairs of PJs for Mother's Day - "in dark colors, in case you mess yourself." It was the sweetest, most thoughtful gift I ever received!

Be sure to post pics from the Zip Line!
Hi Chas-Chuck
Thanks for confirming the decision to come off of 6-MP. Luckily I have a doc who insisted that I had my blood checked every 2-4 weeks. I'm so sorry to hear of your ordeal.
This disease has adversely affected my family as well. Sometimes I feel guilty when I'm having a flare up and can't fully participate in family activities or (like a martyr) I go somewhere but just can't be myself.
Oh, well, I guess that's a post for another time as I'm sure I'm not alone in this department.
I may be seeking your advice if I decide to start Humira. For the next 3 weeks I'm just on the Pentasa and trying to build up my stamina.
Good-bye 6-MP, it wasn't for me...
Again, thanks!

Hi Jan,
I'm gald you got off the 6MP. I know it works for some, but it made my mother worse when she tried it. And I was on a similar drug years ago and like you, it just made me sick.

I'm currently on Humira, and my mother just started it too. She has had very promising results very quickly. It never worked for me when I was on it and sick pre surgery. I think I was just too far gone. But, now post surgery, I'm Crohn's free and on Humira to keep me that way.

So far I have not one side effect from my every 2 weeks Humira shot.

I see you discovered how to include you signature line. Do you still need help with the pics?
Hi Joe!
Thanks for the info on Humira! Sorry that you had to have surgery. I know I'll be tapping into the Humira threads when it gets closer to the probability for me to start it.
I don't think I'm quite ready to post pics, but promise that I will (especially the one that I am sure will show me screaming my head off when I'm on the zip line.)
So glad to have found this site. So glad for the positive thoughts. Thanks for the input! :) Jan