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Humira vs. Remicade

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Ulcerative Colitis
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Posted 8/2/2012 6:53 AM (GMT 0)
Hello

 

I am new to this site as this is my very first post here.

 

My 20 year old son has Primary Sclerosing Cholangitis and Ulcerative Colitis.

 

My question to you is has anyone been put on either one of these drugs and if so can you

tell me side effects? Did it work? Etc......

 

My sons doctor is making this his last option before removing his colon as he has been

on very many different medicines and over the last month has gradually gotten worse.

 

Any input would be very very appreciative.

 

Thanks in Advance!

Posted 8/2/2012 11:02 AM (GMT 0)
FWIW a friend has AS and found relief with Humira when nothing else helped.

BTW, if you are facing surgery with your son have you considered trying a dietary method. IMHO it's worth trying SCD for a couple months before going with surgery. Nothing to lose.
Posted 8/2/2012 11:13 AM (GMT 0)
I was on Remicade but it didn't work. I did not bother with Humira because I was just too sick at the time and I wanted to be done with it all so I had j pouch surgery.

I hope one off these will work for your son but if they don't and he needs surgery, it truly can be a blessing in disguise. Best wishes to you both.
Posted 8/2/2012 11:52 AM (GMT 0)
I'm on Humira. It's helped a lot. A headache from time to time. Otherwise no real side effects. Seems when I get close to next injection symptoms get a little worse. Definitely helping the healing process.
Posted 8/2/2012 1:23 PM (GMT 0)
I was on Humira for about 9 months last year. Unfortunately it didn't work for me, and I was really hoping it would because it was so convenient.
The only side effects I had from it was a minor allergic reaction, a touch of hives on my arms. Took an OTC allergy medication for a few days before and after the injections and things were fine.

I started Remicade back in May of this year. So far it appears to be working. I've experienced being tired the next day, this is very common.
Also experienced some chest and back tightness for a few days after my second infusion along with some minor allergic reaction (hives). Took OTC allergy medication after my third infusion and didn't experience any tightness or allergic reactions.

Just to be on the prepared side of things, I would suggest meeting with a surgeon now while you have some time. They should explain the procedure and answer any questions you might have. I met with two surgeons just as I was starting Remicade, certainly liked one surgeon more than the other.
You can find a good list of surgeons in your area from this website, jpouch.org

Surgery might be the end all, but I'm trying to give my colon as much time as possible, just in case some new treatments come about that might just cure us all.
Posted 8/3/2012 3:37 PM (GMT 0)
Hi, My son sounds similar to yours! He's 20 too and has been so ill with UC. He's been in hospital for 6 weeks in the last 9 months with the same threat of bowel removal. He opted for remicade. It's certainly helped him. His consultant wants him to add imuran to the mix as that stops the body from making antibodies against the remicade. He hasnt been able to take this yet as he had a blood transfusion in March and you have to wait 120 days before you can have the blood test to see if you can take imuran. I am not keen on him being double immuno-suppressed so up until now he has been taking LDN with the remicade and he is very well at the moment. We are in the UK and they say that humira is something to try after the remicade as it's more for crohns. Good luck with your decision.
Posted 8/4/2012 12:06 AM (GMT 0)
My son is currently on 4800 mg of Ascacol, 900 mg Ursodial, 150 mg of Imuran, multi vitamin, calcium/Vit D. supplements.

Just soooo hard to see your child suffer and not know what medical decision is the right one.
I hate this!!!!

We have an appt in 10 days hope we make the right choice.
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