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Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/7/2008 7:52 AM (GMT -6)   
My son's doctor (University of Chicago) is going to switch him to Humira b/c Remicade has stopped working.  He says that if the Humira doesn't work, he wants to try Tysabri, which I'm sorry sounds really scary (even more so than all the other drugs he is on). The thing that I don't like is that sometimes I think the doctors (especially at teaching hospitals) want to try all these new things, but he's only 18 and the drug has only been approved for UC since January of this year.  I know it's our decision and actually my son has gotten to the point where he sees these drugs making him better for 6 months and then stopping and he's not sure it's worth the possible long term consequences for 6 months of relief.  Has anybody heard of or possibly been on this Tysabri?
Mother of 18 year old son
Remicade
6MP 100mg


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/7/2008 8:36 AM (GMT -6)   
I just started Humira.  I don't know the stats but it has been used for a while for RA and Crohn's so at least it's not like it has not been used ever before.  I would be more weary about Tysabri, I personally don't know if I would risk trying it, I have found some scary things about it on the net.  Give the Humira a chance.  Don't forget to ice the injection spots beforehand and to leave the needles out 1-2 hours before injecting to prevent a rash (which I still have since Thursday).  There have been recent studies that show that starting with more aggresive meds usually has a better result for UC than trying all the stuff that usually doesn't work very well.  So maybe that is why the doctor wants him on such aggresive treatment.  When you say that you are not sure it's worth it for the risks, I don't understand if he is considering surgery or what else you are considering... I hope the Humira works for him. 

Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/7/2008 9:13 AM (GMT -6)   
I guess I mean he's not sure if the long term effects of these medications for a few months of remission are worth putting off surgery or the hope that the miracle drug or treatment is going to be discovered. I think he just wants to get on with his life. This disease has already ruined his high school years for him and now it's starting to affect his college choices. I'm also feeling him out to see whether he would ever consider accupunture or some other alternative treatment. I'm just trying to help him figure out what to do next.
Mother of 18 year old son
Remicade
6MP 100mg


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/7/2008 9:37 AM (GMT -6)   
Ok. I wasn't sure what you meant. Humira and Remicade work for years for some people so my opinion is that you should give the Humira a chance, it may work longer than Remicade did, you never know. I would keep researching about Tysabri and discuss its risks with your doctor before trying it. How does your son feel about surgery?
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/7/2008 9:43 AM (GMT -6)   
He's nervous, but as you all know out there, when you're going through the 3rd - 4th week of a horrible flare, anything sounds better than what you're going through. So right now, he would have the surgery tomorrow. When he is in remission, it's another story and it scares him. Plus my husband worked with a guy that had the surgery 20 years ago and he said he was in the bathroom every two hours so that doesn't seem like the greatest, plus the surgery is irreversable and not without it's risks.
Mother of 18 year old son
Remicade
6MP 100mg


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 4/7/2008 1:45 PM (GMT -6)   
Check with the Multiple scerlosis forum. There is a few members on there that are on Tysabri. They may be able to give you more information on it.
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)

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