How bad were your symptoms before Humira?

[Bruski]

Hi. For those of you who have been on Humira and had it bring your crohns under control - how bad were your symptoms before you started? I'm due to start Humira any day now but worried that the disease is beyond being brought under control by treatment (v worried that I'm going to need surgery).
Had a resection about 15yrs ago, fortunately had many years relatively crohns-free but now it's back with a vengeance. The crohns is currently throughout my entire large intestine so surgery could potentially be life changing . I know Humira has good success rates but as we all know, the key with treating crohns is to get in early. Very annoyed with my doctors (and myself) for not getting started sooner (had to wait months for the tests required before starting on Humira).
Any info on bad symptoms brought under control by Humira would be greatly appreciated.

 

[k_dubs25]

I didn't eat for 3 weeks, had arthritis and swelling in my ankles that was so bad that I couldn't walk and spent five days in the hospital before they finally diagnosed me. I started Humira and saw signs of improvement days after the first loading dose.

 

[Liquid Bacon]

I was pretty bad before I turned 18 and was able to start Humira. I had failed Imuran and all the other treatments available to kids. I was EN/steroid dependent (eventually settled on full EN because I was sick of the Prednisone side effects) and in bad shape with a LOT of pain if I tried to eat anything. I've been in full remission with the Humira for 10 years now, but about 5 years ago I had to increase dosage to injecting once every week.

 

[Bruski]

Thanks Liquid Bacon! So you've been on Humira continuously for 10yrs? Do you remember how long it was before the Humira started to work? I know it's different for everyone, just curious about your story.

 

[Liquid Bacon]

Yeah, I've been on it for over 10 years now! I was part of the clinical trials when I turned 18. No real side effects to report except scalp psoriasis, which my dermatologist blames on the Humira but other doctors aren't so sure. It developed about 6 years into taking the drug, and sort of comes and goes, so it's hard to say.

It was about 2 months after the loading dose before the Humira really got things under control but I've been in remission ever since. About 5 years ago, however, my gastro did increase the dose to injecting every week. I felt awesome, had gained weight, 1 solid BM per day, etc, but he could still see some inflamation on the colonoscopies. Now, apparently I'm all clear except for an area of scar tissue that's a little restricted. They said they'd like to remove it, but I've never had surgery yet so they'll leave it in as long as it isn't causing me any trouble.

 

[seaneoin]

Hi. Bruski I was very bad to the point I really was wishing that I would die could not leave house to travel the 45 min drive to hospital with out planing where all the bathrooms I could use were and had to stop 4 times the 5th could not make it to the bathroom I was in so much pain I started humira 5 days later and stayed on Imuran 150mg a day and got it under control again hope I can put your mind at rest it does get better

 

[Nancye50]

I've only been diagnosed since feb. Started Humira in May, saw immediate improvement to a point where it leveled off, went to 80mg twice/month and believe I'm on the cusp of remission!

 

[my little penguin]

DS started after he reacted to during a remicade infusion.
It took about 5-6 months for him but he was started out on the kiddie dise (20mg) which was low for his weight for the first three months .
He has been on it for 1.5 years but had to increase frequency every 10 days and MTX due to juvenile Spondyloarthritis.
Increasing frequency did cause more skin issues.
Dermo said humira/remicade doesn't cause the skin issues but brings them to the surface for anyone who may be prone to skin issues .