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What is your experience with Remicade and/or Humira?

My doctor wants me to do this, I'm looking for real world info. How long does it
REALLY take for each treatment? How much was your co-pay? How does it make you
feel? How does it work for you overall?
 
Hello!

Ok as for Remicade:
-takes about 3 hours for the infusion
-made me feel sleepy, but not too bad (just make sure someone goes with you the first couple times until you know how you will react)
-I know that it cost $5000 but my insurance covered 70%, so $1,500 a pop

Remicade threw me directly into remission... although it takes 3 hours out of your day, it was well worth it for how it made me feel (and it was only every 8 weeks) I think I became sleepy because they give you Benedryl prior to the infusion to offset any allergic reactions.

Then they pump saline (through an IV) into you until the Benedryl sets in. After this, they start the Remicade drip... slowly at first, but it takes approximately 2 hours to build to the full 250 cc amount. After that is all done they drip more saline into you to make sure you are handling everything ok and to watch you for allergic reactions. (the saline drips take approximately 30 minutes each at the beginning and end)

The only bad part about the Remicade is they must monitor your heart rate and blood pressure every 15 minutes so it's kinda hard to sleep (which is what I'd do if I didn't have an IV in one arm and a BP cuff running every 15 minutes on the other). I did have a couple of instances in which my BP dropped pretty low, but it all turned out okay.


ANND for the Humira:
-my copay was $40, but it rose to $150 for a 3 month supply
-its just a little pre-loaded pen (much like an EpiPen) that you inject yourself into your thighs or abdomen
-the medicine does sting quite a bit, but it only lasts for about 10 seconds (its do-able)
-and its taken in a "shock-effect" like fashion:
-the first time you take 4 "loading" doses (so four shots)
-two weeks later you take 2 shots
- then every other week you take just one shot

The Humira is a lot less expensive than Remicade, but in my opinion is doesn't do as well as the Remicade did. The only side effects I've noticed is an occasional headache, injection site reactions (itchy welts that last 2-3 days), and occasional anxiety over having to take the shots.


I hope this all helps!
 

My Butt Hurts

Squeals-a-lot!
My experience with Humira has been amazing. 12 weeks ago I was having diarreah 12 times a day. 40 grams of Prednisone cut it down to 6 times a day. 10 weeks ago I started Humira, and on day 6 I started noticing a difference. Now I go 1 or 2 times a day, and I feel great! I have gained about 35 pounds (much needed) and I can eat just about anything. I haven't noticed any side effects at all. The injections sting a little for only 10 seconds, but they are SO worth it! My copay is $33 for 2 doses (USA preferred care insurance). You can read my whole story about Humira by going to my posts. I think I called it Humira log. But remember that just like everyone's symptoms of Crohn's are different, everyone's reaction to medications for Crohn's are different too.

Are you on anything now? What are your symptoms?
Good luck. Feel well.
 
Only been on Remicade, since January 23rd of this year. Mine takes about 2.75 hours, I only get the Remicade at a set pace, then saline drip for about 15 minutes, and I'm all done in just under 3 hours. I wouldn't call it a miracle drug by any means for me, as I'm still in the flare I've had since August of last year. I still have the suspicion that flagyl/cipro that I was put on in October had better results on me, better than pred and better than the remicade. The only thing is I see more of a difference from Remicade than anything else I've tried besides the antibiotics. The problem is that the dr. likes Remicade and says it's levels above the antibiotics, so it's counterintuitive to revert to a "lesser" treatment like Flagyl or Cipro at this stage. If I don't get results from Remicade soon though I'm thinking they'll need to look elsewhere, perhaps I'm in that 1/3 of patients who it just doesn't do what it should (of course my doc says though, that everyone is different and I'm expecting too much too fast, I'm just envious of all the Crohns patients like KatieSue above who see night and day results, I've had over 3 months of Remicade and still flaring, just to a lesser degree). I just watch some UMD's or play my PSP while doing it...

I noticed no sides I could attribute to the Remicade, they have me on a bajillion different changes, so who knows. I was never given any Benedryl, just watched for reactions. Also had to have the Tuberculosis test prior to the first infusion, which obviously came up fine.
 
Hi Everyone,
I've been shocked reading about how little some of your copays are for Humira. I've been taking it for a while and my insurance hardly covers any of it. I end up paying thousands of dollars a year to be on it. I have Carefirst through Blue Cross Blue Sheild by the way. I signed up for it because it was the only company that didn't ask if you have a preexisting condition. I don't get insurance through my work because I am an independent contractor.
What insurance plans are you all on that cover most of the cost of Humira?

Thanks,

Greg
 

Kev

Senior Member
I've been on neither, so I've no 1st hand experience to relate. However, from the posts I've seen on this site; there is a potential plus to Humira that Remicade may not have.. That is it lacks/limits the potential development of anti-bodies. These may develop while taking Remicade; potentially making it difficult/chancy to stop taking it WITH any realistic hope of returning to it later. So, if the loss of a job, or insurance, may interfere with one's ability to provide for Remicade, then that could present a problem... I dunno if I'm wording this adequately.. If one goes on Remicade, AND it works, then the issue remains that one SHOULD stay on this... regardless of what circumstances other than health that arise... because if remicade is stopped, THERE is a real risk that it can't later be resumed successfully... To date, there doesn't seem to be same risk with Humira. As to which is more effective, you'd have to look at the data.
 

butt-eze

Superstar
I had four Remicade infusions. I noticed a difference and thought it was going to be my lifetime med. However, I had a potentially adverse reaction. Either way it either caused a lung disease or didn't stop my crohn's from attacking my lungs. The doctors can't say for sure. Many people don't realize that Crohn's can attack your lungs too. So, if you do take Remicade and notice that you are even the slightest bit short of breath. Don't shrug it off.

I will try Humira next.
 
I've been on remicade and im currently on humira. Remicade worked great for me until I stopped because I was on too high of a dose to gain the necessary benefit meaning I had built a resistance to it over the two or so years I took it. I definitely will say I got better results from the remicade, though I think I need to up my dose of humira (my doctor does too so it isn't just me) because my crohns doesnt respond as well to the tnf inhibitors at the standard doses. The humira does work rather well and is much cheaper ($60 a month for me) and easier to administer and after the first couple months doing the shots is really really easy. I actually get more frustrated waiting for the shot to reach room temperature now than I do by the actual shot because it takes like 25-30 minutes for this to happen and I always forget to set it out and then don't want to forget so I just sit around talking to friends online waiting for the shot to warmup. Half the time I go to fast and it hurts a bit, but like katiesue said, it passes in 10 seconds anyway, so it is more than manageable.

If I had a recommendation, I would say start on remicade and see how that goes then in 2-3 years which is the earliest a majority of people have to stop the medication, though it seems some people can go quite a bit longer, you can see what options you have available to you then. Both medications do work fairly well, though like I said, I feel I had better results on remicade and would suggest starting on that.
 
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