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08-23-2014, 03:06 PM   #1
tamRN
 
Join Date: Aug 2014

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Humira users

I have had UC for 25 years and have tried many different meds. Usually Prednisone works well but my recent attempts have failed with a flare after tapering off.

So now my MD really suggest Humira. I am soo nervous about taking this med because all I read is horror stories about it. I have it in my fridge waiting on me.

Has anyone had success with this med & if so were the side effects horrible?
08-23-2014, 03:51 PM   #2
my little penguin
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Join Date: Apr 2012

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DS has crohn's not UC but has been using humira for over a year . He is 10 btw.
The injection needle is ok but the med itself really burns .
He used to be tired the day after his injection but other wise no real side effects.
It did take three to four months to start working but DS started out on the kiddie dose ( 30 mg) and just needed to move to the adult dose .

He does not catch any more colds or illnesses than anyone else ( at least last year in the 4th grade).
So if he can survive school germs - I call it a win.
Good luck
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08-23-2014, 06:03 PM   #3
2thFairy
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Join Date: Sep 2010
Location: Dallas, Texas

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I did not take Humira, but was on Remicade for over a year. I didn't have any problems with it. Have you checked out the Humira subforum? You might take a look around there: http://www.crohnsforum.com/forumdisplay.php?f=59
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
08-23-2014, 06:50 PM   #4
tzvia
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Join Date: Mar 2012
Location: Philadelphia, Pennsylvania
I've been on it for about 11 weeks. I feel the same as I felt before I went on it (pain, diarrhea) but it can take 3 months or more to kick in for some people. The medicine stings going in, especially with the "pen". I used the prefilled "syringes" and they are much more comfortable because you can inject the medicine slowely and it burns less that way. Side effects that I have noticed are some extra hair shedding and a post nasal drip that seems to linger.
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Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

08-23-2014, 11:35 PM   #5
DMS
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Join Date: Aug 2009
Location: Chilliwack, British Columbia
DS has been on it for almost 2 years with LDN and is in remission. Still gluten free (by his choice), no side effects, it's been great for him. It worked very quickly when he started it, within a week he was able to keep solid food in him (he was in a VERY bad flare when he started).

He catches no more colds than when he was not on it and his fistula has healed completey.

Last blood work showed his liver was working a little harder than it should - he's on some liver enzymes to help it function.
09-20-2014, 04:17 PM   #6
UghColitis
 
Join Date: Sep 2014
I was on Humira for 10 months after Remicadee stopped working (after 6-months). Humira worked some but not good enough and I started to lose my hair. (A side affect not listed in the pamphlet but you'll find posts about it all over the internet). The Humira shot is painful but it helps if you 1) let it warm to room temperature before administering it and 2) put an ice pack on the injection site for a few mins before injecting. It works for many others so give it a try.

I'm now in a drug study which has helped but after 8 months I am just entering remission now. It is a very slow working drug with moderate weight gain. I have been approved for Entyvio which is very similar to the drug study drug so I'm considering moving to Entyvio.

Best of luck. This disease is a bear but don't give up, at one time, I was in remission for 10 years!
09-20-2014, 04:42 PM   #7
lilac
 
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Join Date: Sep 2014

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I've been on Humira for 5 months now. My loading dose was AMAZING - best two weeks of my life this year - no exaggeration. However, as standard it was once a fortnight after that. I tend to feel no major positive effect after I take it and feel I'm wishing the days away until my next Humira day (which is strange, I know). I've not had any side effects with it either. Sometimes I wonder if I'd be as well just licking a wall instead for all the difference it makes...

If the actual jagging is the fear - I'd suggest icing the site prior to injection. It makes a loud click when injected and this can sometimess heighten the perceived pain of the injection, but once your used to it the clicking won't sound so bad

Also, I was told it can take 12 weeks to work and any side effects can last up to six months after you stop. Not saying that to scare you further, but found that info useful when I started.

Good luck!
12-25-2014, 11:50 PM   #8
Thaymez
 
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Join Date: Aug 2014
Been on it for 3 months. No change. Can't get off prednisone. Insurance won't pay for weekly dose, So Im Stuck on biweekly with no effect. I have no side effects. And as far as the burning goes with the injection, it's miniscule in comparison to the misery of colitis and crohns and is a non-issue with me. I look forward to my injections because even though the medisin isn't working, I still have a sliver of hope that it might start.
12-28-2014, 10:53 PM   #9
my little penguin
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Join Date: Apr 2012

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Days Humira took 4-6 months for Ds to see an improvement .
He was on low dose 20 mg for over 2.5 months
Then switched to 40 mg
It wasn't like a light switch
Just one day he got better without us notice he was got better .
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