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Remicade #91601 04/11/06 09:34 PM
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tam1116 Offline OP
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My son is 16 and has been diagnosed with AS for about 2 years now. It started with pain in his leg which was originally attributed to a non-ossifying fibroma (soft spot in his thigh bone). But after 2 years with increasing pain that spread to his lower back and no new answers from the doctor, he suggested we go to the rheumatologist who diagnosed him after blood tests and an MRI. He has been on naprosyn and methotrexate which haven't helped much. We tried Enbrel which helped the AS but made him severly depressed so we had to discontinue it. Now the doctor wants to try Remicade. Would like to know if anyone else has had treatment with this med and if there were any problems to watch out for.
Thanks for any comments. Tammy

Re: Remicade #91602 05/21/06 12:03 AM
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Sadielynn Offline
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Best of luck to your son. I just wanted you to beware of remicade because of it's harmful effects. Recent news has found that it increases the risk of cancer. Heres the story: remicade cancer risk

Re: Remicade #91603 05/21/06 12:26 AM
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Tiregoddess1 Offline
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Tammy,

I've had several Remicade infusions, for Crohn's. I eventually had to stop treatment with it, but I know lots of people who've done well. As for the younger patients, like your son, I don't know if there's anything in particular to watch for. Your doctor should be the best one to ask, but sometimes they don't know as much as they should.

There have been some recent warnings about Remicade & risk of cancer. Personally, I think it's a question of risk vs. quality of life. Your son is old enough to have a voice in his treatment, but you have the final word. Read and educate yourself...that's about the best I can suggest.

The other thing would be to click on search at the top of this page and search on the word Remicade. There's a lot of info on this message board.

Best of luck to your son and whatever you decide. I'm sure there will be others who will voice their opinions. However, you might get more response on the General Message Board.

Crystal




My opinion is strictly that, mine. However, if I want your opinion, I'll give it to you. ;-)
Re: Remicade #91604 05/22/06 05:18 AM
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Tammy - Tam1116 - Sorry to read of your 16 yr old son. My son is 19 and we began this fiasco when he was a sophomore. We FINALLY found a fantastic Rheumatologist and he began Enbrel 2 1/2 years after our search for a diagnosis began. Actually my son has responded well and is symptom free - could just be between flares - we don't know. My niece is on Remicade and has had some negative responses but will be starting up again soon. I did a lot of research before my son started Enbrel and the doctor firmly suggested he take it because his spine had fused mildly already. He also gave us a RX for methotrexate. When I did the research, I said NO WAY and I stand behind that decision strongly. He honored my decision because I had done the research and I gave him good reasons for declining it. You might want to give Enbrel another try. It's normal for young teens to become depressed, especially when they have a disease. As he matures, he might handle Enbrel better. Just a guess on my part - I'm not a doc.


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