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I am still a Crohnie

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Crohn's Disease
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Posted 12/7/2010 5:28 PM (GMT 0)
For those of you that have seen some of my posts the last few months, my GI was questioning/trying to verify my Crohn's diagnosis, now that the arthritis has gotten so bad and our last resort is to stop Humira and try Enbrel (which will do nothing for the Crohn's).  Well, a few months, three tests and about $800 later, hey, I am indeed a Crohnie.  Capsule endoscopy again was the only thing that showed it and I don't have pictures or much details yet, but it did show inflammation and I'm assuming it's still in my TI. 

But, regardless, GI is going to let me try Enbrel and said I will have to switch back to Humira if the gut starts acting up.  So, I guess I am essentially going without any Crohn's meds and hoping the Enbrel will help with that, even though it's not FDA approved for Crohn's.  I'm relieved to know that I haven't been treated wrong all of these years and that it's not all just in my head.  And I really hope the Enbrel helps, because the arthritis has gotten to the point where I can't deal with this much longer.

So, for any of you whose doctors are not sure or questioning a Crohn's diagnosis now, make sure you fight until you are happy with the answer or at least the doctor's effort.  Mine tried to tell me that insurance woulnd't approve another capsule endscopy without other tests showing something.  I pushed anyway and turns out, my insurance didn't even require prior approval.  It cost me a decent amount, but it's worth it to know for sure.

Posted 12/7/2010 6:36 PM (GMT 0)
Glad (I think;) to hear you finally have the confirmation you needed. You know I had alot of joint issues years back, and my Rheumy talked to me about Enbrel. She said she thought it would be helpful to the CD too, although she wasn't 100%. I hope it does the trick to get your tender joints feeling better. Hugs~
Posted 12/7/2010 6:51 PM (GMT 0)
It's always good to know what's be haunting you for so long!!
Posted 12/7/2010 8:45 PM (GMT 0)
I am sorry that you were diagnosed but happy that you have an answer to your pain. I was really holding out that they would find something curable but I know how hard it is when you are so sick and have no idea what is causing it. I went through a year of it's just IBS before I was finally diagnosed through the pill cam and then biopsies and it was hard to keep myself from thinking that maybe it is in my head. When they finally found the crohn's and told me, I was overjoyed. Now I wonder what the heck I was cheering about. lol
Keep us up to date on how the enbrel works for you and if it does end up helping your Crohn's. Humira and Cimzia did nothing for my arthritis and that is the main reason that I went back to Remicade.
Posted 12/7/2010 10:16 PM (GMT 0)
Hey, hopefully the Enbrel will help the joints and keep the gut in check. I'm going to keep my fingers crossed for you, and hope for the best! ((Hugs))

PV
Posted 12/8/2010 3:51 PM (GMT 0)
Thanks, everyone.  I will let you all know if the Enbrel works for the gut as well. 

Tsitodawg, I would have tried Remicade again had I not had to stop it previously due to allergic reactions.  GI still thought it was worth trying again, but I was too scared to have another reaction and rheumy thought it wasn't worth the risk either. 

Posted 12/8/2010 5:06 PM (GMT 0)
Just curious - have they tried Methotrexate for the joint pain and keeping the Crohn's under control?

Methotrexate seems to be the only thing that keeps my arthritis (from the crohn's and Lupus) under control. It does wonders for the Lupus but I still tend to have flare ups of crohn's but can get them under control with Entocort and or/cipro and Flagyl.

It is great that they have figured out what the problem is - it is nice to have a name for it :)
Posted 12/8/2010 6:32 PM (GMT 0)
The mtx was the only thing that really helped the arthritis, but it raised my liver enzymes and I had to stop it.  Tried again at a lower dose and it didn't help any, so we raised the dose again and then the liver enzymes came up again too.  So, I'm not allowed to have it anymore.  =(  I cried the day I found out.

Posted 12/9/2010 9:57 AM (GMT 0)
I would be hesitant to go back on remicade if I had a reaction also. When I went back on remicade, my G.I. was really concerned that I may have a reaction also since I had built up antibodies from being on it for 5 years. I don't know if it was being off of it for over a year or if it was the change in premeds, but I am actually doing better on it this time around. We did not do a loading cycle and went straight to my former dosage with premeds of cortisteroids and benedryl.
I also tried methotrexate and had some relief from my arthritis but had some major problems with my liver from it. It helped the remicade but shot my liver levels through the roof. I also had problems with my legs when I was on it and sometimes would almost lose all strength in them. It was really weird.
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