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#275287 - 07/10/16 09:21 AM now Crohn's-have to switch Enbrel to Humira
stosh9191 Offline
Registered Visitor

Registered: 04/30/12
Posts: 5
My daughter just turned 21 and has been on Enbrel for AS with good results for 4.5 years. Now being diagnosed with Crohn's and advised to switch to Humira. I'm afraid of switching (and awakening the much controlled AS) even though I know Enbrel doesn't treat IBD and others have good results with Humira. Plus knowing one medicine down doesn't make me feel good knowing there are only so many and she is relatively young. Any thoughts appreciated.

Also, we love her rheumatologist and hope she will still be the "quarterback" though the gastroenterologist will lead on the Crohn's issue. Not sure how all this will play out. To boot, my daughter is spending a college semester in Europe, leaving mid-August and so I hope we can figure out her new medical plan pronto.

Lastly, there is the issue of what to do with 2.5 months of Enbrel in our refrigerator if she switches to Humira. Again, any thoughts welcome. Really just need someone to tell me it will all work out! Thank you!

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#275288 - 07/10/16 02:54 PM Re: now Crohn's-have to switch Enbrel to Humira [Re: stosh9191]
CBMom Offline
Registered Visitor

Registered: 06/18/14
Posts: 17
Loc: NJ, USA
Hi! I'm 22 and I have AS too (diagnosed at 15). I was diagnosed with Crohn's at 19. I was on Simponi at the time, which wasn't used for Crohn's, so was switched to Remicade and Methotrexate. It worked well for my Crohn's (less well for my AS) and my Crohn's was in remission for 3 years.

Now I'm on Cosentyx, which does not treat the Crohn's but does treat the AS. My AS has always been much MUCH worse than my Crohn's so we felt trying Cosentyx was worth the risk. Within a couple months, my Crohn's flared and we're still figuring out how to treat it, since Cosentyx is really working for my AS.

There are other options for Crohn's, if she doesn't want to switch biologics. I'm currently on Imuran and Entocort for the Crohn's. 6MP is another option. Methotrexate is also used for Crohn's.

However, biologics work the best and that's probably why they want her to switch. I know for me, anti-TNFs put the Crohn's in remission, while just Imuran did not.

My rheumatologist and GI really work together to manage my care though sometimes it is hard to get them to communicate with each other.

Unfortunately, there is no real way to know if Humira will work for your daughter. Hopefully, it will. It's just trial and error.

Humira was the anti-TNF I did best on, for both the Crohn's and the AS. The shots do hurt more than Enbrel, just as a head's up.

It's definitely more complex with the two diseases, but luckily, there are more options now that treat both -- Humira, Remicade, Cimzia, Simponi (off-label) and Stelara (which should be approved soon).

Good luck!


Edited by CBMom (07/10/16 02:55 PM)

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#275422 - 07/20/16 01:01 PM Re: now Crohn's-have to switch Enbrel to Humira [Re: stosh9191]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 233
Loc: Ventura County, CA
HI- sorry for the late response. I'm not on here much anymore. My son is 20 and started on Enbrel when he was 11 for AS- not for Crohn's. After around 3 years, the Enbrel just wasn't working as well anymore and the Dr. switched him to Humira. He has been on it ever since (5-6 years) and with good results. It works well enough that we were starting to think maybe he was in remission. However, he just returned from a month long backpacking trip in Europe where he opted (against my advice but who listens to their Mom?) not to take his meds with him. He was staying in hostels and just wherever he could find a place to sleep and refrigeration was going to be a big problem. When he returned, he couldn't wait to get back on his Humira as he was having inflammation and stiffness. Anyway, apparently he does still need his meds and they are still working very effectively. We had the same concerns as you when he was switched- there are only so many different meds and what if this stops working??? His peds rheumy told us that there are constantly new meds being introduced and that she thought we would always have alternatives.

As far as what to do with your supply of Enbrel, you might check with the Dr. to see if they have any resources. Some group like Dr.'s w/o Borders or Medical Brigade thru a local university might be interested (my son recently went to Nicaragua with this program to treat people in remote villages- they did take meds with them, but I'm not sure of the source of the meds.)

I hope you have found a solution by now- good luck!
Jennifer

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