Going to be starting Humira

My GI has recommended that I start with Humira. Tried pentasa, sulfasalazine, azathioprine, 6MP and all have failed misreably. Been on and off steroids for about a year but this batch of steroids aren't even cooling my flare at all. Been told I'll need to consider biologics so I have the option of humira.

I am absolutely sh*tting myself about going on this drug but I have read that it can be amazing. But I have also read some horror stories. I can't think of any other option I have now as I simply cannot go on through this flare and cope with university studies etc.

How was everyone else when starting this drug?

Hi cd1992,
I'm not the IB'er but my 5 year old is. She did Humira for about 5 months but in the end it wasn't working. However I will say she didn't any side effect from it.
I hope it works and your pain free very soon.

Ds started it over a year and half ago after reacting to remicade . He is 10 now.
It works well just took months to start working
No real issues since starting it
Good luck

It's working for me. If it doesn't work for you, there are a lot of similar drugs out there for you. One of them will work.

Think positive. I know it sounds trite, but been there done that got the T shirt, and believing that it will work out for you is half the battle.

I can definitely understand your reservations about starting Humira! The point at which I first and secondly tried it (long story), I was super sick, and was hopeful that it would work as well as Remicade did for me in 2003 (which was amazing and completely stopped a flair after the first dose). Unfortunately, things were left too late, and I ended up needing surgery anyway.

Now I'm on Humira because I want to stay in remission, and from the choice of drugs I've had, it was my first. Yes, there are scary potential side effects, but I think the prospect of going through some of the stuff I've dealt with again fair worse.

I know how much work it is to get Humira in the UK. I really hope that if you get it, it works wonders for you, and that you're feeling better quickly!

I have delayed starting this drug since like April because I have been pretty petrified of the possible side effects but it has got to the stage now where I simply cannot keep going on with the pains, gas, D, blood etc. I'm still a bit apprehensive but I'm trying to be optimistic, the thought of getting back to normal again is exciting me so fingers crossed it works!

Thanks for the replies. I'm sick of reading horror stories about this drug so some positivity is good! Long till the day these horrible diseases are 100% curable.

In reply to Carrie, I actually felt at first I was being pressured into taking it, which is surprising as the NHS is usually quite tight with things like that, especially with the way the economy has been in this country. After my 3rd batch of steroids in a year I got a letter from my gastro basically saying I NEED to go on something else or I could end up in serious trouble so I have decided this is the time.

It works for a LOT of people. They are out working living their lives, and don't post about it on the internet. It does have serious side effects for some people, and it doesn't work for everyone. But it does work for a lot of people. If you got the statistics in front of you, you have more of a chance of it working than not working.

It saves them money, when it works: it prevents hospitalizations, and gets people back to work. Give it your best shot. It could change your life. Nobody gets a guarantee, but it's ok to hope for the best and believe it's going to help.

Add in most drugs have potential side effects -
Some even deadly -like abx or tylenol bith are given to infants
Tylenol can result in liver failure or Steven Johnson syndrom etc...
But in the end the good the drug can do outweighs the possible bad .

So we go for the good since we all know crohns can be ugly or even deadly if it's under treated .

Good luck

cd1992 said:

In reply to Carrie, I actually felt at first I was being pressured into taking it, which is surprising as the NHS is usually quite tight with things like that, especially with the way the economy has been in this country. After my 3rd batch of steroids in a year I got a letter from my gastro basically saying I NEED to go on something else or I could end up in serious trouble so I have decided this is the time.

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I admire anyone who has to deal with the NHS. When I lived in London a few years ago, I was told I could not see a specialist for a year unless it was an emergency, and hence I couldn't get Humira for over a year. Once I finally got a GI, it still took another five months, and at that point, it was apparent that surgery was necessary.

I hope that you get all of the positives from Humira, and none of the negatives!

I have been on Humira for eight weeks now. The loading doses went well with little side effects that weren't bothersome (headache and fatigue). The shot I did 2 weeks ago went pretty badly and I broke out in a rash all over my body and slept for 2 days in a row, however, my Dr. has stated to me to continue to Humira. It could have been a change in the weather or the Humira, we are not really sure since I have very severe allergies and one day it was 90 degrees outside and the next it was 30. We will see how it works out here in a bit when I do my injection. I will say, however, regardless of if it was really side effects to the last shot or not, it has decreased my d immensely and my pain has gone from being constant to very little throughout the day. I also have had some days where I haven't had d, which hasn't happened on any drug besides the Humira, so I want to believe it is working. I hope that you get on the Humira and it helps. Yes, the possible side effects are scary, but I think it is more scary for CD to go untreated and to be on steroids for a long period of time.