Teen male, want off Azathioprine and onto Apriso or Pentasa. Seeing new GI tomorrow

[bluemarlin]

Hey all! I'm 18 and only had 1 flare a couple years ago. Have been diagnosed with Crohn's in terminal ileum after severe bleeding which led to blood transfusion.

After eating a good amount of scorpion hot pepper sauce, I started having bloody diarrhea. My doctor prescribed me flagyl (which took care of the bleeding) and referred me to a GI. The GI scoped me and found some ulcers in my terminal ileum. A week or 2 later I started bleeding alot again and this GI really downplayed it saying a little blood can look like a lot and I probably felt dizzy due to hot showers and opening capillaries! Next day admitted to hospital needing transfusion and diagnosed with Crohn's. Anyways, was put on steroids and saw new pediatric GI. Steriods stopped bleeding quickly.

The ne pediatric GI said my disease was mild and couldn't understand why I had bled so much.(Had a new scope, MRI and pill cam showing mild disease). Tapered off steroids and placed on azathioprine.

My blood work has been normal since then. No inflammation showing on labs and no problems with my stomach. Being a "young male" on azathioprine really scares me with the cancer risk. The last cold I had really knocked me down and led to pink eye. I'll be starting college in the fall and staying in the dorm which concerns me as well. I fear I'll catch everything from everyone.

I am meeting with a new adult GI tomorrow since I've recently moved. Any advice on how to approach getting off aza and convincing them to put me on a milder drug such as pentasa or apriso? Has anyone gone onto a milder drug during remission?

Look forward to hearing thoughts, experience. thanks!

 

[my little penguin]

5-Asa ( Pentasa and apriso ) are not recommended as monotherapy for crohns
Basically it's an anti inflammatory cream for just the surface layer of the intestine .
Unfortunately crohns affects all the layers of the intestine
Most Gi equate giving Pentasa to giving aspirin to a brain tumor patient
Not going to help too much but not going to hurt either .


Understand wanting off Aza
But maybe might try methotrexate instead

As far as catching everything
Aza /6-mp/ Mtx /humira /remicade
Don't make you more likely to get sick with colds etc...
Only opportunistic infections
Such as pneumonia tagging along once you have the flu

Good luck

Tagging clash
Tesscom
Jmrogers
Maya142
Crohnsinct

 

[Maya142]

Hi and welcome! My girls are both college students and are on biologics + immunomodulators. The younger one is on Azathioprine + a biologic. They have had no trouble with infections, even in college. They don't really even do anything special -- just wash their hands a lot and don't share food or drinks if they can help it.

Unfortunately, most kids get sick a lot in college - the health director at my older daughter's school told her living in a dorm is like living in a petri dish!

Most kids with Crohn's need more than just Pentasa or Apriso to control the disease. Crohn's tends to be more aggressive in kids/teens and so pediatric GIs treat it aggressively.

The cancer risk with Imuran is very small. I'll admit, it scares me too but at some point the disease becomes scarier than the medications.

CCFA has a good presentation about the various risks and benefits of IBD meds:http://programs.rmei.com/CCFA139VL/

Good luck with whatever you choose.

 

[Clash]

Same as maya142, my son is in college and on a biologic and an immunomodulator, methotrexate. He has been on a biologic (first remicade now humira plus immune modulator for a few years now.

Now, he has had pick eye that required several rounds of treatment but Crohn's has extra intestinal manifestations(EIMs) that concern the eyes and chronic conjunctivitis is one of the eye EIMs.

You may want to ask about methotrexate. I agree with those above that 5ASAs aren't great monotherapy for CD. A Cochrane review has shown them to be have the same efficacy as a placebo (sugar pill). They can be effective for UC since UC only affects the top layer of the intestine but are prescribed off label for CD.

If you do decide to step down to 5ASAs only I would definitely get regular testing to include blood work with inflammatory markers and possibly fecal calprotectin stool testing.

Good luck with whatever treatment you choose.

 

[Jmrogers4]

Agree with asking about methotrexate as an option, I know my son's GI will generally move teen boys to methotrexate even though the risk is small, it's more for peace of mind.
My husband who also has crohn's was on Pentasa for many years in the beginning but it was standard protocol back then and not a lot of other choices. It did not do much lots of cycles of prednisone/flaring. He was placed on Imuran 14-15 years ago and has been in remission. Under treated crohn's can do a lot of damage as the cycle of flares can lead to a build up of scar tissue which can lead to strictures and other damage.
Mild Crohn's can also quickly turn to severe which is why most people are on maintenance meds to keep it mild.
We did a few college visits over spring break, we are just in the beginning of college decisions as my son is a junior but as others have said lots of hand washing and I think an awareness. My son looked at a fraternity house at one of the colleges and the fraternity president was joking about having to keep the window open all the time in the freshman room because it was a breeding ground for bacteria. Obviously that would not be the right place for him but the dorms looked good and we visited the disability office and found out he could have some accommodations there possibly even a private bathroom.
Good luck!