My first year with Crohns

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bcarb101
New Member


Date Joined Jun 2017
Total Posts : 7
   Posted 6/28/2017 10:03 AM (GMT -7)   
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

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 6/28/2017 5:57 PM (GMT -7)   
Not sure I'm the best person to comment really, as I'm a natural pessimist and your case isn't looking that good from where I'm sitting - steroid dependency is a strong predictor of surgery.

That said, see what the second opinion says. I've seen some people on these boards in dire straits that I thought were headed for surgery end up getting better. So you might have a turnaround with Stelara, or whatever, and be in remission for years. And Remicade is worth a go, since you did get some response out of Humira: it just stopped working fairly quickly.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

bcarb101
New Member


Date Joined Jun 2017
Total Posts : 7
   Posted 6/28/2017 6:32 PM (GMT -7)   
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.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3319
   Posted 6/28/2017 7:00 PM (GMT -7)   
I agree with @NCOT, Remicade is definitely worth trying out. I'm not sure why your GI just blew it by. A lot of times with Humira and Remicade, one won't be good but the other will be great. Everyone's body is just so different.

Steroid dependence is rough. I'm so sorry. A very, very slow taper might help you get off of it. Like, going down by 1 mg per month or something.

Even if we don't have all the answers for you, we GET you! We know how awful and unpredictable this darn disease is, and we don't shy away from blunt talk about the gross symptoms. So welcome, and know that you're definitely not alone in this!!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1653
   Posted 6/28/2017 10:26 PM (GMT -7)   
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.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 6/29/2017 4:58 AM (GMT -7)   
One thing to bear in mind about Remicade is that very severe disease might need double or even triple or quadruple doses initially to bring it under control. If funding doesn't bar the way, I'd go for the highest/most frequent doses possible at first - you can always scale back later on.

It's pretty important to be on 6MP or azthioprine (Imuran) to minimise the risk of antibodies. Doesn't really matter which one, but 6MP is the slightly 'cleaner', better tolerated version. Azathioprine metabolises into 6MP, so basically you're taking the same drug, but aza has an extra step to go through.

I've had 5 doses of Entyvio and I don't think it's done a lot. However I'll know more when I get tests done towards the end of this year. My last test (pill cam) showed that the Crohn's was pretty active but that was after 2 doses and not 5, so...
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

bcarb101
New Member


Date Joined Jun 2017
Total Posts : 7
   Posted 6/29/2017 9:49 AM (GMT -7)   
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

sparkleplenty
Veteran Member


Date Joined Nov 2010
Total Posts : 566
   Posted 6/29/2017 5:38 PM (GMT -7)   
I do acupuncture. For sure it gives me some temporary relief of symptoms. When I have joint pain, it for sure gives me relief from the pain.

I've found for me, turmeric, and fish oil to be helpful in keeping inflammation down. When I'm flaring I take glutamine and slippery elm as well.

Entyvio seems to be pretty slow acting. I started it last August and it was Feb/March before I felt like it was working.

Good luck. Hope you can find some relief.
Diagnosed w/Crohn's in 2005. Meds: synthroid, allergy meds, B-12 (liquid), probiotics, fish oil, turmeric, migraine meds prn, and vicodin prn. Gall bladder removed 8/15. Started Entyvio 8/5/16.

Have tried: sulfasalazine, asacol, entocort, imuran(allergic), humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia, pentasa, MTX & Arava for joint pain

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 60
   Posted 6/30/2017 5:30 AM (GMT -7)   
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.

bcarb101
New Member


Date Joined Jun 2017
Total Posts : 7
   Posted 6/30/2017 10:47 AM (GMT -7)   
Thanks for all the input, it's very much appreciated . I'm praying that this next entyvio dose 5 weeks instead of 8 weeks makes a difference! All you can do is one day at a time .

floatthereins
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/10/2017 7:08 AM (GMT -7)   
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.

bcarb101
New Member


Date Joined Jun 2017
Total Posts : 7
   Posted 7/10/2017 7:19 AM (GMT -7)   
You as well my friend, be strong and don't hesitate to contact me, it feels great to have other folks with the same problem to talk to ,be strong. It will get better

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 232
   Posted 7/10/2017 7:42 PM (GMT -7)   
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!
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