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Starting Humira

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Posted 6/23/2008 7:04 PM (GMT 0)
Hi,

So I just received my first 4 shots of humira a week ago. I thought I was feeling better for the first 2 days after, but now I feel like I'm getting worse. It seems like my bathroom issues are not any better and if anything worse. Yesterday, I actually thought I was getting dehydrated. The nurse said usually people start feeling better about a week after the loading dose. Clearly, that's not the case for me. How long did it take everyone else to start feeling better? Did you get worse before you got better?

Posted 6/23/2008 7:21 PM (GMT 0)
Hey hang in there, it can take up to 3-4 months, I am on it, but flaring too much in my 3rd month, on prednisone now til I hear from my GI, I was really hoping it would work for me...but everyone else I know is doing remarkable.  It is too early yet for you, hang in there!  Welcome, hope this site helps you as much as it has helped me.  We are all in the same boat! Good luck!
Posted 6/23/2008 10:21 PM (GMT 0)
I hope it works for you. I just took my first 4 shots on Friday night - HOLY FREAKING CRAP! Talk about painful!!! Anyway, the next 2 days I felt pretty good and then... SHAZAM... I spent all of last night in the bathroom. I'm kind of bummed. I really thought it was working "quickly". I hope that it works fast for you, but I would say to give it time.
Posted 6/23/2008 11:30 PM (GMT 0)
I've been on Humira for about 2.5 years now. It definitely takes a bit to kick in. It also seems to wear off a bit, but so far it's still the drug that keeps on kickin' for me. And yes, those shots hurt like a b--ch. I've never converted to the pen, still on the old fashioned syringe. I heard from my doc that Cimzia is a bigger needle and thicker :) I told him I'd stick with the Humira for now.
Posted 6/24/2008 2:21 AM (GMT 0)
If Humira "wears off" does that mean that you are building antibodies to it?
Posted 6/24/2008 10:50 AM (GMT 0)
Good question Staci. There is a test technically but I'm not sure if it's widely available. I did have a few allergic-type reactions to it (rashes basically) so that would suggest yes. Nothing as bad as the remicade reaction though. For whatever reason, those only happened a few times. If for some reason I need to stop and re-start it, my doc pre-treats with prednisone to keep the reaction risk low. Seems to work.
Posted 6/24/2008 7:06 PM (GMT 0)
I just posted a similar quetion, I hadn't seen this one. I just had my first 4 injections last Friday, and I haven't seen any improvement at all. In fact, I've felt worse! I'm the first patient in the practice to switch from Remicade to Humira, so no one knew how long it might be before I got some relief.
Posted 6/25/2008 2:08 AM (GMT 0)
Just a note to say that it seems like you are on quite a few med's, Metallichic. Wondering if all of them together could be causing some issues. Hope you can get off some of them as the Humira kicks in more.
Posted 6/25/2008 12:42 PM (GMT 0)
I concur with potatoqwn. You're on a lot of meds which could be interacting, etc. Are they all managed by your GI doc?
Posted 6/25/2008 1:40 PM (GMT 0)
Holy smokes batman! Metallichic,  you are on a lot of heavy drugs!  I am taking Humira, on my 3rd month on Friday and it wasnt working but now I am on Prednisone, 40mgs, for the summer because if the Humira doesnt work, then surgery is imminent, my 3rd one to boot.  I worry of all the drugs I am on, I am on nexium now because of the Prednisone which gave me wicked hearburn.  My question to you is, how do you know what is working and what is not, and side effects from one drug to the other.  I take calcium to combat the sides of Pred but I am also prone to kidney stones and had 4 removed and terrified of another.  How long have  you been on all those drugs?? confused
Posted 6/25/2008 1:58 PM (GMT 0)
I am getting my loading doses tomorrow, finally!!! (my mail order pharmacy is sucking right now ) I am glad to know I need to be patient and wait till it works. My Doc has me continuing the Pentasa and the entocort until I feel some relief from Humira and then I will wean off both of those meds. He wants me to quit the Imuran so I have not taken any today for the first time in a year. He has been to some education seminars and learned the 2 together are not good. Metallichic , I wonder if some of those meds you don't always take? Some seem to be similar drugs. I myself when having my Gerd might occasionally take a pepsid ac with my prilosec but that is not an everyday occurance. Same thing goes with Ambien most don't take every night but on occasion. I also take Soma so that usually helps me sleep some.
Posted 6/25/2008 1:58 PM (GMT 0)
Thanks for everyone's replies. Metallichic, you are definitely on WAAAAAY to many medicines!!! You should probably talk to your doctor!
Betagirl- My doctor gave me a choice between Cimzia and Humira. I know that Cimzia is new and there isn't much info about it which is why I chose the Humira. I think he said it actually wasn't as painful and maybe even just 1 shot a month, which seemed 10 times better, but I went with the Humira. I use the pens which I feel like I've heard hurts more than the syringes but it wasn't so bad.

I'm glad to hear that I'm not the only one that thought it was working SO quickly and then it suddenly seemed to stop. Maybe it was detoxing my body?? That's sure what it felt like!!! Last night I pretty much slept through the night and didn't have to wake up and use the bathroom which is pretty good for me, so maybe that's a good sign. I'm actually looking forward to next Monday when I get my next 2 shots. Hoping I'll get some relief. This med better work though because not sure what the next step is if doesn't!! Good luck to you guys!!
Posted 6/25/2008 5:49 PM (GMT 0)
i have been on humira 8 months now. Going up to 1 time per week on humira. For me 1 time every other week just not strong enough. I can take up to 3 months to def work. HAS ANYONE ELSE HEARD OF ANYONE DOING HUMIRA 2 TIME PER WEEK?

Entocort 9mg, pentasa, humira 1x per week
Posted 6/25/2008 6:05 PM (GMT 0)
Nope, never heard of anyone having it 2 times a week, the recommended dose initially is 1 bi weekly which is what I am on, I even took one 4 days earlier than I was supposed to because my flares were uncontrollable.  Still nothing a week later, so the GI put me on 40mg of Prednisone to calm it down and maybe get the Humira to work.  I will have been on it 3months Friday.  I even hinted and asked about "weekly" and he shook his head, umm no.  I go see him tomorrow to give him an update or discuss a 3rd surgery, in which case I dont want to, but my theory, why be on all these drugs if the are not working.. Humira, and other drugs all have sides and we dont know them all. I am my GI's first patient on Humira, because everyone else faired well on Remicade, which I became horrifically allergic to.  I am on another site forum too and no one so far has been on 2 times a day the most is 1 per weekly.  Good luck, it takes up to 4 months so I hear. 
Posted 6/26/2008 1:12 AM (GMT 0)
The most I've been on was 80mg a week. That was when I had a new fistula. It closed it, but I started to get some weirdness with my joints, so as soon as it did the job we cut it back. So over the past 2.5 years I've done 40mg every other week, 80 mg every other week, 40mg/wk and 80mg/wk. Whew. :) Currently on 40 every other week. It's nice to be able to play with the dose depending on how things are going.

Wahoo - yeah I heard it's only 1x per month too. I'm not really ready to change just yet. But it's nice to not be out of meds any more if the Humira did stop working :-)
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