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humira or not to humira

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Crohn's Disease
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Posted 11/6/2009 6:51 PM (GMT 0)

i have been on entocort for.. 4 years i think. my doc wants me to at least try humira, even though we both think i will have the same reaction that i have had to remicade, 6-mp, imuran, and cipro&levoquin (high fever and arthralgia after a week on meds). 

as a pharmacist i know the long term effects of steroids are bad - and i have been on entocort a very long time. i also know the risks involved with humira, and hate that we have to be on meds like that - but i guess thats all there really is right now. 

i want to hear about eveyone's experiences with humira - immediate and long term.  one of my customers has been on humira for crohns for quite some time, and she believes that many of the other problems that she is having right now are due to the humira (breathing problems, for example)

i guess i've been putting it off until i get really sick - right now, my diease is active, but stable. not getting better, but not getting worse.  i also am kinda scared that humira is really my last hope - if i can't tolerate it - what's left??  i'm only 32 and i don't wanna run out of options already!

Posted 11/6/2009 6:57 PM (GMT 0)

I was on Humira for a little over a year and only had injection site reactions and upper respiratory infections as side effects.  It kept my Crohn's in remission but my arthritis started flaring and the Humira wasn't helping enough, so I switched back to Cimzia about a month and a half ago.  Seems like maybe the Humira took care of my stomach spasms more than the Cimzia is, but the Cimzia definitely helped more with the arthritis for the first 2 weeks.  Now it has worn off and I have another week and a half to go before I can get it again. 

So, Humira was a good option for me for the most part and I would take it again if it came to that.  And, I got it free for a year, and then it went to a $5 copay after that, so I was very pleased with the cost. 

Posted 11/6/2009 7:01 PM (GMT 0)
hmm, good to hear about the humira and stomach spasms.. i hate those the most - debilitating sometimes.
Posted 11/6/2009 11:47 PM (GMT 0)
Hey, I started Humira about 3 months ago. I have no side effects so far, hoping to keep it that way. It seemed to work extremely fast for me, my flare was all settled down before my second loading dose. So for now, my experience has been pretty positive. Don't be scared about running out of options, there are several drugs that are in late trial stages for us. Like Vedolizumab, Ustekinumab, and ABT-874.
Posted 11/6/2009 11:57 PM (GMT 0)
Today is Day 4 after the injections. I guess you can say I am in remission. No blood, diarrhea, and pain. All of my stools are very, very small though. I have a stricture in my sigmoid colon. it could be because of that, but I have ribbon stools even in remission. However, these are smaller, and there are a lot. I am not sure if I remember too well, but I think after I was first diagnosed and put on prednisone, it was similar.
Posted 11/7/2009 5:34 PM (GMT 0)
I've been on Humira for 6 months and haven't seen much improvement.  While on the Humira I formed a fistula, so now I am back on the Prednisone and on two anitbiotics.  Dr said that says the Humira isn't working for me.  I go Monday to see about switching to Remicade.  I am hoping that will kick in my remission
Posted 11/7/2009 10:47 PM (GMT 0)
I would give Humira a try. If you have bigtime trouble on it, you can stop using it.

AmyTupelo, as in Mississippi, Elvis? ;)
Posted 11/9/2009 2:55 AM (GMT 0)
Hi amytupelo,

 

I have been on Humira since Dec. 2008, with no bad side effects so far.  It certainly wasn't my first choice, but as you can see by my signature, I was allergic to everything else!  I too was very concerned that I'd have a bad reaction and then there'd be nothing left to try!  But so far so good.

 

I still had to have small bowel surgery to remove part of my strictured intestine (scarring does not go away), but the Humira had healed the ulcerations.

 

Just a sidenote---When I first went on Humira, I'd feel a little achy, tired, and cold for a couple days after the injections, but this pattern eventually subsided.

Posted 11/9/2009 3:40 AM (GMT 0)
Hi amy,

I think the Humira is worth a shot. You don't want to let yourself continue to be in a state of active disease -- even if it feels like you are not getting worse -- because, as your disease grinds along you can build up scar tissue in your terminal ilium which will likely lead to a nasty resection. Have you looked at LDN or diet yet?

Best,
CH
Posted 11/9/2009 3:42 PM (GMT 0)
Have you looked at LDN or diet yet?

I really just learned about LDN from this site - I have been reading a lot about it - I am definately going to bring it up at my next appointment! it sounds pretty promising. knowing my doc, she will want to see how i do on humira before trying something like that. i guess it's time to just suck it up and try it out...

Thanks everybody for your input!
Posted 11/9/2009 6:53 PM (GMT 0)
I have been on Humira for two months now, really slowed Chrohn's. I am very worried about the side effects. Wondering if anyone has had any. Right now my forhead is red and feels itchy, also I heard people put on a lot of weight but I haven't seen that yet. Any advice is welcome.
Posted 11/9/2009 8:07 PM (GMT 0)
I too was deathly afraid of the side effects of Humira. My Dr. told me this: "You should be more afraid of this diease and what it can do to your body if left untreated  than the side effects of any medication" I have been on Humira for 6 months and have seen quite an improvement. I have not had any noticable side effects. Good Luck!
Posted 12/28/2009 2:32 PM (GMT 0)
starting humira tomorrow.. finally! i can't believe how much my ins paid! would have been $30 copay per month, but with a coupon the pharmacy had.. only $5! unbelievable! i should know in about a week if i will have the same stupid bad reaction to it that i have had to everything else.. wish me luck!
Posted 12/28/2009 8:27 PM (GMT 0)
I have been on humira since april 2009 and flared in dec 2009 dr did quick scope and said the crohns looks worse than before i started. So he is trying once a week dosing for 12 weeks. He keeps refusing to resect and he doesnt want to switch to something else quite yet. However i have had crohns for 16 years im ready to give up and go forth with my first surgery.
Posted 12/29/2009 12:05 AM (GMT 0)
I'm waiting to be shown how to use the epi-pens. I've had my script for a week now and want to get going. I had colonoscpy 2 weeks ago and found out my crohns is back. I just want to get it under control ASAP so I don't have to go under the knife again. I used to be worried about the side effects, but now I worry more about what Crohns is doing to me.
I'm ready!!!
Posted 12/29/2009 12:30 AM (GMT 0)
Ur gi didnt show u??? Weird! it was a theatrical production for me! I had to watch DVD first then the nurse did my loading dose for me and demonstrated 4 times LOL. She offered me a try I let my partner do it! He enjoyed it a lil too much lol
Posted 12/29/2009 7:12 AM (GMT 0)
Good luck amy! let us know how it goes. Could you enlarge the font on your signature?
Posted 12/30/2009 6:54 PM (GMT 0)
man those shots burn.. it went well so far. i do believe the humira made me have a period, though. i have been on continuous BC for at least 2 years with no period to ease my IBS symptoms - and an hour after the shots i get menstrual cramps and a period - man i didn't miss those cramps.ugh.
so the nurse says almost every patient they have says the humira burns less in the abdomen and most choose to give themselves the shots there instead of the thigh.. how do you all do it? thigh or abdomen??
Posted 12/30/2009 9:46 PM (GMT 0)
Both! When the pain in thigh becomes unbarable i switch to tummy. Right now im so thin and have no thigh fat so im gonna have to do tummy for a while.
Posted 12/30/2009 11:22 PM (GMT 0)
I just had my start up dose and the nurse had me give 2 in the gut and 2 in my thighs. Those little buggers sting especially in the thigh. I'm going to give them in my stomach from now on.
Posted 12/31/2009 10:23 AM (GMT 0)
I have been on Humira a year and love it. Prior to that Remicade. So far I have done very well and it really helps my joint pain. I have very little joint pain when using the Humira. My big problem is cellulitis in my legs not related to the Humira. This has screwed up staying on the Humira consistently and I can tell the difference when not on it.

Be sure to let the Humira get room temp before injecting. I am terrified to do the stomach shots so I use my thighs.
Posted 1/12/2010 9:55 PM (GMT 0)
got my second set of shots today - less painful than last time, i think.
but i was just realizing last night that i havent had any abdominal pain in 2 days! yay humira!
Posted 1/12/2010 10:30 PM (GMT 0)
yay!
Posted 1/13/2010 1:46 AM (GMT 0)
I give my next 2 tommorrow and I have not had any pain in over a week.
I hope it is working.
Posted 1/13/2010 5:34 PM (GMT 0)
Glad it's working for all of you- nothing like being pain free, eh? I finally had my first shots on Sunday. I agree the thigh was so much worse..actually I didn't feel a thing in my tummy...that is definitely where it's going next. So far, so good on no reactions, not even at the injection site!! (knocks on wood)! I feel better, not alot of pain, but still some D, so that's ok. I just wish it made me lose weight and gave me lots of energy, man I would have it made!!! ;)
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