|
Forums33
Topics44,197
Posts519,915
Members14,169
| |
Most Online3,221 Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
|
Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360 |
So they found crohn's while on humira?
GL on the steroids they made things worse for me. Well didn't do anything for my back - good or bad but it actually flared my colitis. Which happens in some people (happened even on the low/moderate dose)
Last edited by Tnate; 12/09/13 11:17 AM.
|
|
|
|
|
Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
|
OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
They found mild inflammation at the ileum (CT enterography). The eosinophils were gone, but given the that inflammation was still present and that eosinophils are sometimes involved with Crohn's, he went with that diagnosis. He believes that it is much more likely than eosinophilic colitis, which is very rare. I'm not completely convinced, but who am I to argue with Mayo!
David
Diagnosed AS August of 2012 Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013 Currently taking Cimzia, Naproxen, and the occasional Tramadol
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Now that I'm on the Humira, typically the constipation is gone in week one, and starts to come back in week 2. But last round, 2 full weeks of good bowels. This round, first week was good, second week has been a bit more variable: loose bowels / diarrhea with some undigested food one day, didn't go 2-3 days, then finally when I went, back to constipation with mucus. More Humira tomorrow night….that should make it better again.
Rather than steroids, which I'm trying to avoid, hoping the Humira will slowly heal the gut…...
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
|
|
|
|
|
Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
|
OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Tnate, the doctor from Mayo put me on Budesonide. Is that one you have tried or something else? Honestly, my symptoms had become very mild since being on Humira, but I still have some mild symptoms, so I think he just wants to see if he can completely eliminate the GI symptoms.
David
Diagnosed AS August of 2012 Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013 Currently taking Cimzia, Naproxen, and the occasional Tramadol
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
David,
Did your symptoms become "very mild" immediately on the Humira, or did they get better and better all the time?
I ask because while the Humira helps, I wouldn't say things are always mild. First week, yes, usually fairly mild, but second week can still be a challenge, both with the arthritis (enthesitis, sacroiliitis, etc) and the GI constipation.
The rheumy predicted that the Humira would help more and more the longer I am on it.
Just wondering your experience?
And how often do you take it? every 14 day? or every 10 days?
I'm on it every 14 days, but the rheumy said we could do every 10 days if I wanted to. Not sure yet how I want to proceed.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
|
|
|
|
|
Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
|
OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Sue,
I take Humira every 14 days. I wish I could pinpoint when things really started to get better. Also, I was taking Qvar for the esophagitis and some of that steroid may have gotten further into my GI tract. I didn't even think about the Humira helping my gut issues until I was at Mayo and we started reconstructing the timeline. It became apparent that at some point after starting Humira that my GI symptoms had greatly diminished. So, I can't really say how sudden.
For the joint stuff, I do notice an improvement more immediately associated with the timing of the injection, but the GI symptoms continue to stay very mild throughout. I think (as does the Mayo GI) the Humira is helping to keep it in check.
David
Diagnosed AS August of 2012 Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013 Currently taking Cimzia, Naproxen, and the occasional Tramadol
|
|
|
|
|
Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
|
Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360 |
Was it entocort I assume? I'm on Uceris myself cause a lot of my inflammation is in the rectum and entocort only works on the small bowel. I think they are good and should not flare your colitis. The properties in these topicals is different than other steroids. I think mesalamine is a bit stronger though but these are good when used in conjuction with ASA. It will definitely help though.
|
|
|
|
|
Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
|
OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Those are new terms for me. I just know I'm on Budesonide. I was told that it would stay in the GI tract and not effect the rest of my body the way other steroids can.
David
Diagnosed AS August of 2012 Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013 Currently taking Cimzia, Naproxen, and the occasional Tramadol
|
|
|
|
|
Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
|
Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360 |
Entocort=topical steroid prescribed for small bowel inflammation Uceris=topical steroid prescribed for inflammation of the rectum and colon (may work on small bowel too) They are both budesonide. Like you said they only work in the colon so they don't cause all kind of side effects. They are gentler too. Mesalamine helps most crohn's patients to my knowledge and is a bit stronger in my opinion. And they work better together
Also the humira can help the GI stuff while not working on the back. This is what happened with me last time I was on it. Healed up my GI track but wouldn't work on my back arthritis.
Last edited by Tnate; 12/13/13 12:14 AM.
|
|
|
|
|
Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Found this thread of interest, so checked out the side effects - sadly, 'not' confined to gut, there are side effects and IF *anyone has cataracts or glaucoma or diabetes then must steer clear of ALL cortisone/cortisone family drugs. Entocort=topical steroid prescribed for small bowel inflammation Uceris=topical steroid prescribed for inflammation of the rectum and colon (may work on small bowel too) They are both budesonide. Side Effects :- (a very long list of side effects)http://www.drugs.com/pro/entocort-ec.htmlhttp://www.drugs.com/cons/uceris.htmlOther Medical Problems The presence of other medical problems may affect the use of this medicine. Make sure you tell your doctor if you have any other medical problems, especially: Cataracts (eye disease), or a family history of or Diabetes, or a family history of or Eczema (skin disease) or Glaucoma, or a family history of or Hypertension (high blood pressure) or Infection (e.g., bacteria, virus, fungus) or Osteoporosis (thin bones) or Rhinitis (inflammation inside your nose) or Stomach ulcer, active or history of or Tuberculosis, active or history of or Weakened immune system—Use with caution. May make these conditions worse. Liver disease (including cirrhosis), moderate to severe—Use with caution. The effects may be increased because of slower removal of the medicine from the body.
MollyC1i - Riding OutAS
|
|
|
|
0 members (),
869
guests, and
195
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|