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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Humira clearing up symptoms?


08-01-2017, 10:23 AM   #1
inflammatoryjen
 
Join Date: Aug 2017
Humira clearing up symptoms?

Hi all, I'm new here so I apologise if this is posted in the wrong place.

I have inflammatory arthritis/ankylosing spondylitis and I am currently taking methotrexate and humira once every 2 weeks for it which is working amazingly even though I have only been on humira for 8 weeks.

At the same time, humira seems to have cleared up all of my stomach symptoms that I have been ignoring for years which makes me think that the stomach issues could be related to the arthritis or inflammatory in nature.

I've always assumed that my gastro issues are IBS with urgent diarrhoea, mucus in stool, fatigue, stomach pain, cold sweat/chills when stomach pain is bad, and fatigue (could also be related to arthritis) which seem to come in flares. So I will be fine for a month or 2 then have a week of a bad stomach then be fine again. Things improved with methotrexate and seem to have completely resolved with humira except when I was late on humira by a week and my stomach and joints got bad again. The pain seems to get worse after eating and is pretty central in my abdomen.

I have never had elevated inflammatory markers (seronegative arthritis) nor blood in my stool which is making me question IBD.

I have told rheumatology and I'm waiting to hear back what they think but my biologics nurse reckons that I need to be seen by gastroenterology. Does this sound similar to what anyone else has experienced?

TIA
J
08-01-2017, 12:34 PM   #2
NJZen
 
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Join Date: Sep 2015
Location: Ringwood, New Jersey
I've actually had quite the opposite. I take Humira for my Crohn's, and it has since cleared some recurring acne as well as joint pain in my right knee. Indeed it could be helping inflammation. No harm in seeing a GI and at the very least getting targeted bloodwork and a cat scan to see if any other 'oscopy' is needed. Finding out you have a problem before damage is done is a good thing. I was very stubbornly in denial of my Crohn's in the late 2000's, and as a result did so much damage I had a severe stricture form and a resection that would probably have been avoidable.
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Crohn's Disease since 1989, not diagnosed until 2005.

Former:
Pentasa
Pantoprazol
D3/Folic Acid/OsCal/Omega3/Multi

Current:
Humira
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Resection 10/1989 08/2015
08-01-2017, 05:12 PM   #3
inflammatoryjen
 
Join Date: Aug 2017
Hi NJZen,

Thank you for your reply. Wow it does sound like we are very similar but also opposite.

Have you ever seen a rheumatologist? I'm glad your knee is feeling better though!

Do you normally get a cat scan before an 'oscopy (whichever one they think is appropriate)? My ESR and CRP have always been normal but I did start methotrexate about 6-7 months after my symptoms started which resolved things about 80% but then again everything could all be unrelated and it may not be IBD. My biologics nurse has emailed back to say that humira might have helped if it was IBD so I am waiting to hear whether I should go to the GP or not.

It sounds you have had quite a time with your Crohn's!! Hows the humira doing?
08-01-2017, 06:45 PM   #4
Maya142
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My daughter has both AS and Crohn's. The AS was diagnosed first (she was diagnosed at 12, initially with juvenile spondyloarthritis and then progressed to AS later). She had gut symptoms - weight loss, belly pain - but we assumed it was from NSAIDs and did not scope her. She was also put on Humira and her symptoms got better.

When she was 16, Humira stopped working for her and that's when the Crohn's really became a problem. That is when she was scoped and diagnosed.

Both Humira and MTX could be helping IBD, if you have it. It's also quite common to have gut inflammation with AS, which is very similar to Crohn's but milder. Generally that does not cause bad symptoms though - it's called "subclinical gut inflammation."

Since you do have symptoms, I would definitely see a GI, even if Humira is helping. In fact, that does point to something inflammatory. Generally a colonoscopy is the first step, and after that an MRE or pillcam to look at the small bowel. They could do a CT but those are avoided if possible because of the radiation.

For what it's worth, my daughter did not have typical Crohn's symptoms when she was diagnosed. She only really had abdominal pain, some weight loss and constipation. Later she developed diarrhea and occasionally has blood in her stools. There is really no "typical" for Crohn's - symptoms really vary.

She had normal inflammatory markers at the time. There is one specifically for IBD - a stool test called Fecal Calprotectin, which will tell you if there is inflammation in the gut. It's more specific than ESR or CRP and that one was high for her. She later also developed a high CRP.

Her AS has been severe and hard control, while her Crohn's has been relatively mild. We also treated her Crohn's aggressively because we did not want it to get bad like her AS/

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-02-2017, 04:57 AM   #5
inflammatoryjen
 
Join Date: Aug 2017
Hi Maya142,

Thank you so much for your reply!! I hadn't thought about gut inflammation secondary to AS, that is a really interesting point. I assume the symptoms of subclinical inflammation are similar to IBD but a lot more mild? That sounds like how I have been, though I have always been on MTX at the same time.

My symptoms started around the same time as your Daughter's though I didn't get diagnosed and start treatment until I was 18. They are calling it an evolving spondyloarthritis but I am on the AS pathway for biologics. We seem to be about the same age too (I just turned 21).

The humira & MTX helping is what is making me think something inflammatory rather than functional... It's so strange that crohns affects everyone so differently! I haven't had much weight loss, my main issue is abdo pain & diarrhoea but it seems to flare up and then be absolutely fine between flares - is that possible with IBD/subclinical inflammation do you know?

I'm sorry to hear about her AS being so aggressive, but I am glad her Crohn's seems to be milder! Do you mind if I ask what AS meds she is on?

Thanks again for such an informative reply, I really appreciate it!
08-02-2017, 09:08 AM   #6
Maya142
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For AS, she is on Cosentyx. It's a biologic but it does not help with Crohn's. We ended up doing that because she went through pretty much ALL the anti-TNFs (Remicade, Humira, Enbrel, Simponi) and they failed for her AS.

My husband has AS and it's been pretty aggressive (5 hip replacements, fused lumbar spine, fused neck, fused ankle, fused SI joints) so we know we have to treat her aggressively. He is actually doing fine on just NSAIDs, but has a LOT of joint damage. The goal is to prevent that.

Typically, the goal is to prevent spondyloarthritis from evolving into AS. Obviously, it works sometimes and not others. The GOOD part is that you're on a biologic, which is the best thing you can do for yourself.

The other things would be stretching/physical therapy/physical activity (gentle - such as biking or swimming). Our rheumatologist always used to tell my girls "use it or fuse it!"

My older daughter also has AS but no IBD. She is 23.

I would definitely see a GI and figure out what's going on with your gut though. There are definitely periods between flares where you could be fine. Some people have no symptoms at all and STILL have Crohn's - pretty severely too. You really need to be scoped so someone can figure out what's going on.
08-02-2017, 09:12 AM   #7
Maya142
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I'm going to tag my little penguin since she has a son with juvenile SpA and will be able to tell you more about subclinical gut inflammation.

I think it's mild inflammation in the gut - often without symptoms or found accidentally - caused by AS. Generally, treating the AS makes it go away. It looks identical to Crohn's (or very similar on biopsies), so it's hard to tell if it's AS related gut inflammation or Crohn's.

Either way, you need a GI to treat/follow you.

Initially we thought my daughter had such mild Crohn's that it was AS related. But after going on Cosentyx, her AS got better, but her Crohn's got worse - telling us that she probably has independent Crohn's.
08-02-2017, 10:36 AM   #8
NJZen
 
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Join Date: Sep 2015
Location: Ringwood, New Jersey
Have not been to a rheumatologist, my knee issue had more to do with the amount of driving I do, the constant shift from brake to accelerator takes it's toll. After about an hour it gets uncomfortable. When I'm on vacation it's like it never happened.

I'm not sure if it is typical, but for me the cat scan with contrast was to:
1) See if there was any inflammation and a necessary procedure. (I had one within a year)
2) Due to my symptoms make sure I'm not so inflamed that they could cause damage doing it.

Humira is working out ok, but definitely not in remission. The Dicyclomine helped the diarrhea, though it was actually an adjustment to actually have my gut keeping stuff in. I felt so heavy and uncomfortable at first, I was so used to food just flying through me.
08-26-2017, 07:51 AM   #9
Lorikeetie
 
Join Date: Dec 2014

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I have a seronegative spondylitis and gut issues too. I was on methotrexate + humira. Now on Enbrel + methotrexate. Since stopping humira my gut symptoms have flared up. I have an IBS diagnosis, but my GI is going to check for Crohns again soon (colonoscopy).


08-29-2017, 06:52 AM   #10
my little penguin
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Enbrel has been known to "unmask" Crohns on those kids with juvenile arthritis
Kids who have both juvenile arthritis and Crohns are not given enbrel since it does not help Crohns
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08-29-2017, 12:09 PM   #11
Maya142
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My kiddo's IBD showed up while she was on Enbrel for juvenile spondyloarthritis. Before that, she was on Humira, which I guess was taking care of both conditions.

Once on Enbrel, she had gut symptoms - abdominal pain, weight loss, constipation - and the scope found Crohn's.
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