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Crohn's and Lupus

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Crohn's Disease
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Posted 2/15/2011 7:17 AM (GMT 0)
Hi, new to forum and have posted another thread to introduce myself and give history.

Quick question, how many people have Crohn's and Lupus on here. Not those who have developed it due to Humira but who have it before or thought they had it before they started Humira.

Only reason I ask is that started Humira last week and looking online at side effects noticed Lupus mentioned. Had heard of it but didn't know huge amount about symptoms and so looked it up and surprised to find can tick a lot of the list that I have but had always assumed they were because of Crohn's, antiphospholipid syndrome, reduced kidney function, skin rashes, fatigue, joint pain, arthritis (that's the ones I have that I can think of off top of my head).

However it then goes on to say that whilst colitis and Lupus is recognised, Crohn's and Lupus is very rare. So now am too worried to see my GP in case she thinks I am being paranoid. Went to see one about joint pain few years ago and she said... 'so, it's nothing' without examining me and so have never metioned it again as felt like I was making it up. Would like to point out that only go to doctors for antibiotics for chest/sinus infections and when Crohn's flares up as try to avoid them as much as possible!

Posted 2/15/2011 7:33 AM (GMT 0)
I would write down all those symptoms on a piece of paper for the doctor. Then ask her if she thinks you might have Lupus in addition to or instead of Crohn's. If your rashes are made worse by the sun you should be sure to note that fact.

If she sees everything written down at once it may help her to address each concern with you. I think it's OK to tell her you are wondering if you might have Lupus so she knows what you are worried about.

If she thinks Lupus needs to be ruled out, I would expect her refer you to a rheumatologist. If she doesn't think you may have Lupus it's OK to ask her to explain her thinking so you understand.

It's important to be correctly diagnosed - one way or the other. And there is an overlap in some symptoms between the two disorders that can muddy the waters if you have those symptoms.

I am also under the impression that it is rare to have both. But I do know of one person who has been diagnosed with 3 serious autoimmune disorders: Lupus, Crohn's, and RA.

Best wishes,

Patricia
Posted 2/15/2011 10:33 AM (GMT 0)
Thanks Patricia. The Crohn's is most definately Crohn's as have all those symptoms and the biopsy they took was text book result apparently. It is only that is last 5 years or so have developed the kidney problems, rashes when haven't had ezcema since small child and was then completely different, and that all things seem to be immune related.

I will hold off for now as want the Humira to start working and get in some sort of remission before I start being poked and prodded for anything else. Like to try and deal with one thing at a time, otherwise starts to get confusing!
Posted 2/15/2011 4:30 PM (GMT 0)
Hello - I am one of the "Rare" ones to have BOTH Lupus and Crohn's. I was diagnosed with Lupus first - I have NEVER been on any Drugs that would induce Lupus either - no Remi, Humira, etc.

I DO get different symptoms with both diseases -

Lupus - I have the Butterfly Rash on my face pretty much all the time, Joint pain (fingers, knees, wrists and elbows), deep muscle aches, Positive ANA with high titre (this tends to go up and down), deep exhaustion, mouth and nose sores, and I do have some kidney and Liver involvement also. My rash on my face gets horrible if I am in the sun and I tend to get very blotchy patches all over from sun exposure - being out in the sun will literally exhaust me to the point of not being able to function.

Crohn's - big D, weight bearing joint pain, abdominal pain, intestinal spasms, etc.

My Rheumy has told me that it isn't common to have both diseases as it affects different cells in your body but that they are both Auto-Immune diseases.

I take Methotrexate to control both diseases and it helps to keep things pretty quiet - occasional Crohn's flares more so than the Lupus.

Questions let me know and I will try to answer them :)
Posted 2/15/2011 5:47 PM (GMT 0)
Thanks karasmommy, like I put in the original post, it was only cause I read it can be side effect of Humira that I looked it up as although heard of it didn't know symptoms. When I read list it seemed a lot on Lupus were ones I had. However, no one has ever made connection before and so slightly reluctant to see GP as don't want to be seen a hypochrondriac. Trouble is a lot of the symptoms do cross over on both Crohn's and Lupus and Lupus is a difficult disease to spot if you have other underlying conditions as it can manifest in so many different ways.

Think I am going to wait for Crohns flare up to be better under control and then make appointment and print off the pages I found on a very good UK Lupus site and take them with me. They reckon a GP would only see 1 or 2 patients in their lifetime who have Lupus so wouldn't always be first thing they think of, especially if symptoms can be found in other illnesses.
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