My first year with Crohns

Hello everyone , first time I have wrote on any Crohns related forum , I just thought it would be nice to hear from some people going through the same stuff I am , Currently 34 years old and have had crohns a little over a year now . So far I have been on humira , it worked for about 5 months then stopped , now currently on entyvio and has been working great until about 3 weeks ago , been dealing with a bad flare up . So they decided to try the Entyvio infusions every 5 weeks instead of every 8. Also on 3 pills of Imuran daily. I had been on 40 mg of prednisone for over 6 month, mabe closer to a year when I first started crohns and missed 3 months of work . While the Entyvio was working I tapered off the prednisone and experienced severe joint pain everywhere , I was limping around , I felt twice my age . Doctor did tests and said I had ardrenal insufficiency due the prednisone withdrawls. Now currently waiting for my next entyvio infusion and praying that it will help , also back on the prednisone to try and knock this flare down . Starting to get scared that im running out of options as far as meds to help my condition , My crohns is in my colon ( some in the beginning and some at the end ). Surgery or colon removal scares the hell out of me . My doctor is sending me to UCDAVIS medical center for a second opinion , hopefully I get some more answers . My Doctor has mentioned Stelara injections next , but I don't want to use all my ammo so fast , don't want to give up on the Enyyvio yet . He said Remicade probably wouldn't work since the Humira didn't . I would love any input or advice , sometimes you feel alone with disease . Thanks in advance.


Brandon

Thank you ,I appreciate your response, how is the Entyvio working for you. I am taking Entyvio along with imuran, how does 6mp compare to imuran.

How long have you been on Entyvio?

Do you know why you stopped responding to Humira? Did your doctor order any blood tests to check for antibodies to the Humira, and/or to check your blood levels of Humira to make sure you were getting enough in your system?

The fact that you responded at all to Humira means you do respond at least to some degree to anti-TNF medications. Some people don't at all, and are called primary non-responders. They often don't respond to ANY of the anti-TNF drugs (remicade, humira, cimzia, etc). But you did respond for a while, so there's a chance you could respond to Remicade as well.

Probably best to give Entyvio all the chance you can, and switch to Remicade or Stelara only after you've tried everything to make Entyvio work - and by upping your dose frequency and giving it time, that's what you're doing.

Its encouraging that you guys think Remicade could still help it comes to that . I have been on the Entyvio since nov- dec 2016, I was having infusions every 8 weeks , but my GI changed it to every 5 weeks just this month because I started to flare up. The Humira stopped working because I built up antibodies to it according to the lab work I had , GI also said increasing the humira dose wouldn't help. It worked good for a while . I keep asking my self , when I have a flare does that mean the biologic ( humira / entyvio ) has completely stopped working and its time to change to a different drug , Or can it be that something trigger a flare that goes for a bit and then the humira / entyvio kicks backn and starts working again after the flare has calmed down ????? I don't want to give up on a drug if it has the potential to help once the flare calms down , Does that make since to anyone? Does anyone have any home remeidies / vitamins / supplements that actually work to possibly calm down a flare , ive tried lots of vitamins and supplements , its hard to tell what works or not, I just know I hate being on the prednisone , but I don't know what else to do? My wife is having me try Acupuncture this month , anyone try that . Anything is worth a shot .Thanks again its very nice having you all to chat with , have a great 4th of july

Brandon

For joint pain, perhaps you could take a look at a product called Slo-mag. It's a slow release magnesium that my dad told me about. He has Lyme Disease and it has helped him out tremendously. He's also recommended it to friends (all his friends are old, really old) and many have also had great success.

Other than that, good luck to you man. My heart goes out to you.

Hi there,

I was recently diagnosed with Chron's myself. I am 23 and just like you, I feel MUCH older than I actually am. My GI has mentioned starting Remicade, but I am still in the hospital and trying to get stable. Currently I am on hydrocortisone and mesalamine.

I wish you luck, be strong.

And being a mom of a son with severe Crohn's I know that there are many trials and errors until the right mixture is found. My son had surgery 8 months after diagnosis which I probably dreaded more than he did. His TI was removed along with 8 inches of his small intestine AND his appendix. The results have been incredible. His most amazing GI doctor ever said to view surgery as one option not as a failure. Best to you and your search for the right combination. Things DO GET BETTER!