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My 18yr old has had 2 endoscopes & 2 colonoscopies in the last year after losing about 30 pounds, The doctor said he had trouble getting the scope to go through the lower small intestine and ileum due to the amount of inflammation and ulcers. He prescribed Budesodine and Pentasa, My son was on the Budesodine about a week and a half before he started the Pentasa. Was on the Pentasa for 3 days and had a severe allergic reaction of hives and swelling of his hands. His doctor said that it would be hard to pinpoint which medication caused the reaction and that maybe "chasing the flares" isn't the answer; that maybe we should try to get ahead of the disease by starting Humira. Of course, my fear is comprimising his immune system at such a young age. I feel there has to be some other treatment in between Pentasa and Humira. In my mind, biologics were always a last resort when he condition started to get really bad. He's on a prednisone taper for the month to give us time to make a decision. I know a second opinion with another doctor would require more scopes and I don't want to put him through that again so soon. I just don't want him to end up in a bubble 15-20 years from now because his immune system is so damaged due to these drugs. Am I wrong to feel this way?

Reply posted for charbs.

He is very involved in the decision making. He's the one who doesn't want to jump in with a biologic. He feels that he and the doctor can monitor the inflammation through blood work, but his doctor wants to see a CAT scan first. He said if there is scarring already that he is advising against a "wait and see" approach. We have taken this time to research both Remicaid and Humira and I think he's open to either one at this point. He was on a Prednisone taper and finished that a few weeks ago and his energy level is really low at this point. Having the scan done Wednesday and seeing the doctor next week, so hopefully we'll have a plan of attack then. Thanks for taking the time to respond. Every bit of information we've gotten over the past few weeks has been taken into consideration in helping us make a decision. Thanks!

Reply posted for dmrunner1010.

Is your son involved in making medical choices on his disease?  He is eighteen after all.  It doesn’t seem like you are taking a very aggressive path for him.  By all means get a second opinion, don’t worry about having more scopes, the only bad thing about them is the clear out the night before.  I’ve had at least a dozen of them.  There are a lot of meds and biologics on the market, unfortunately there is no one Med that works best.  You may have to try several different treatments before finding one that works and that takes time. There are no easy answers.

Reply posted for dmrunner1010.

Medication will definitely help! Also, I've found that Stelara works wonderfully for me! I hope you find something that works well!

Reply posted for dmrunner1010.

Thank you so much! We are looking into doctors in both Pittsburgh and Cleveland. Will definitely look into Allegheny. I truly appreciate you taking the time to answer. Glad you have found relief with Humira the past few years!

Reply posted for dmrunner1010.

I have been on Humira for over 7 years and it was my miracle treatment.  I am experiencing some potential side effects recently but nothing has been confirmed and I still am in remission with my Crohns.  I can honestly say I might get one cold a winter and it is a little worse than normal but nothing serious.

I see a Dr in Pittsburgh at Allegheny.  I would highly recommend any of the doctors at Allegheny Center for Digestive Health.  I drive 2 hrs and it is well worth the effort.

Good luck to your son, tough disease but treatment has come a long way.

Reply posted for sarahc89.

Thanks for sharing your experience! His doctor did say that basically all he would have to do is call him or our regular family doctor any time something like a cough or cold starts so they can call him in a prescription if it starts to hang on too long. Hearing from you all has definitely given me a much clearer picture of what we'll be dealing with and being able to read though all of these different posts has been a real eye opener. I appreciate it all very much. Good luck with everything!

Reply posted for dmrunner1010.

Hi there. 
I have been on Humira for 1.5 years now and it definitely takes education. I by no means would say I live in a bubble. I work in the medical fiedl (so exposure to lots of gross stuff) I live in the mountains and am very active and I like to travel. The biggest thing I have had to do is just remember that your body is compromised so if something starts feeling bad then go to the doctor. Also with vaccinations learning about the ones you can and cant have for travel. I have been on antibiotics 3x since Humira for 1 week doses for random cuts and scrapes that end up becoming inefected but all of that in mind it is still much better than being on steroids. I would just say that educate yourself and know when to ask for help.

Reply posted for akr008.

Thank you! I just want to make the best decision and I don't want to cause him any irreparable damage. It definitely helps to know that you haven't had major issues with biologics after all of these years.

Reply posted for dmrunner1010.

I agree with seeing an IBD specialist. I was diagnosed with Crohn's at age 16, tried a handful of the low-tier meds and was on a biologic (Remicade) within a few months. It's been 10 years and I've now been on multiple biologics, rounds of steroids, had a few surgeries. I don't feel like being on a biologic at a "young" age put me in a bubble but rather gave me the opportunity to be in remission. 

Reply posted for kumputer.

Thank you so much for your suggestion of an IBD specialist & universities. His diagnosis is Chrons. Will definitely look into your suggestions. His doctor also does not want him on prednisone for any length of time. Only prescribed it due to the allergic reaction. We are lucky to be in between Cleveland and Pittsburgh so we should have some opportunities out there. Thanks again!

Reply posted for dmrunner1010.

First question: What's the diagnosis? Colitis or Crohns?

If he has colitis, you could consider mesalamine. It comes in a few different flavors. Suppositories, enimas, or pills. I used to be on the pills and suppositories, and they worked well for at least 8 years past my diagnosis. The advantage of these is that they are topical anti-inflammatory drugs, and do not compromise the immune system. Most people don't have side effects. I never had any.

That all said, there's no biologic drug that compromises the immune system worse than prednisone if I'm not mistaken. I've been through 3 different classes of them, and now I'm on a 4th. Remicade to Simponi (similar to Humira) to Entyvio, and now I'm using Xeljanz. Typically patients with UC will go through biologics in that order, and only start biologics if the other options fail. For my disease, I believe that every drug I've ever used was effective at least for a while. But, I never put myself in a bubble. I'm doing just fine at the moment. Typically I might have to deal with a common cold for a little bit longer than most. At worst, I got a shingles outbreak a couple months ago, but that was more due to being on prednisone for longer than expected than anything else after a nasty flare up that's now under control.

I recommend seeing a doctor that is not just a GI, but an IBD specialist. Google search "IBD clinic" plus the nearest state university to you. Ever since I started seeing specialists in universities on the cutting edge of treatments for IBD, I've been treated far more effectively than before.