Looking for information

[Christymcd11]

Hello my name is Christy and I'm 36yo. I'm looking for some help/information on the humira injections for crohns. I was diagnosed with UC when I was 21. Went thru all the pill forms of meds for 10 years before my dr. suggested a complete colectomy. I had my entire colon removed in 2003 with a temporary iliostomy placed and a J-pouch created. The first couple years I was ridden with pouch infections. I'm also constantly dehydrated by liquid stools and trouble with malnutrition. In 2006 I had a baby with a very normal and healthy pregnancy. Since then I've had an IV almost 24/7 through home health care. My last couple colonoscopy/endoscopy has shown lots of inflammation in the small intestine and nothing wrong with the pouch. The doc finally decided to try humira. I started it in October, done GREAT!! No IVs at all, feel really good, no side effects. I did the 4 shots, 2 shots, then went down to just the 1 shot 2 weeks ago and now I'm not feeling so great. Nothing else has changed other than that. I'm feeling extremely tired, light headed, no energy, dizzy....all signs of dehydration usually. I'm waiting for lab results this morning to confirm if that is the problem.
So after my long story.... anyone on humira that has needed to increase their dosage? I can't seem to find any information on that. I would love to hear from anyone using humira, about your experience, good or bad. My docs bypassed the remicade treatment, I think b/c of some other health issues I have had. I had a liver transplant in 2002, but it has done wonderfully with no problems at all. Also my niece (by marriage) had the same surgery as me, she tried remicade in its trial stages and had an anaphalactic (sp) reaction.

 

[catfud]

Hello Christy welcome to the forums. I don't have any experience with the meds you are taking so I cannot answer your questions. I know we have members that are currently on those meds so hopefully one will post in here soon.

 

[Christymcd11]

I should have mentioned, I have never been officially diagnosed with crohn's. My initial diagnosis was confirmed to be UC when I had my colon removed. Now my GI says I have the symptoms of crohns but the pathology does not show it and the pictures don't look like it. So I'm guessing that is why they never tried the remicade. Not really sure why we jumped right into humira first.

 

[My Butt Hurts]

Hey Christy - welcome to the forum!
I was on Humira for 4 1/2 months and it worked VERY well. Then it just stopped working so much. My doc wanted to double the dose, but insurance denied it. I have now had my second Remicade infusion and along with just coming off a taper of prednisone, I am feeling pretty good. I'm hoping that the next dose kicks in just a bit more.
If you do a search on here for Humira you will find a lot of information and personal experiences.
Hope you start feeling better.

 

[kromom1]

Welcome Christy! I tried Humira for 7+ months, and it didn't really work for me even while taking it with Imuran. Like MBH, I have now had my second infusion of Remicade, and that seems to be helping already, as I have been able to taper off prednisone for the first time in 5 months - yay!!! It sounds like you have had a really rough road and been through a lot. I hope you find something to help you very soon! Good luck!

Lisa

 

[dayng1016]

Hi Christy! Welcome to our world. You will find a lot of good info on here. I am currently on Humira for almost 5 months. So far it's working great, no problems. I only tried 1 treatment w/ the Remicade, had to stop because my out of pocket cost was almost $2000 each time. Of course, for me, I could not afford that, so Humira was recommended. It's been going great, so as far as the insurance problems with needing to get an increase in dosage I'm not sure how that would be. I hope you get some relief soon.