starting injections

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JanieCockman

Posted Tuesday, December 09, 2003 1:41 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 12:33 PM
Posts: 6, Visits: 0

To who can ever help, My 8 yr old daughter was diagnosed in August by her pedi with JRA but had to wait until October to see a Pedi Rhume before we could get meds. She was started on Prednisone and methotrexate. My daughter has suffered extremely from July until october. She finally got relief from the new meds. We went back yesterday and she is not doing well so now next week we will start injections. The doctor wants her to join a study and do a injection called Humira. It is approved in adults but not children. Or she can go on Enbrel injections. Can someone help me with what they know about these injections. With the Humira the injection is every other week and the Enbrel is twice a week so of course my daughter wants to do the Humira. They both make me nervous but we are desperate because she is starting to regress. Her hands and feet are very swollen and painful, She has poly arthritis. She sometimes gets so depressed because she has had to give up just about every activity she was doing. Cheerleading, gymnastices, tumbling and basketball. She is a very active child. I just joined this site and am enjoying everyones stories. I know longer feel alone. Janie

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rabbjbmom

Posted Tuesday, December 09, 2003 3:30 PM

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Last Login: Monday, February 15, 2010 8:13 PM
Posts: 360, Visits: 26

Dear Janie, My son has been on Enbrel for a year. He is 15 years old and was diagnosed with spondyloarothopathy about 3 years ago. While I will say that enbrel has not gotten rid of his pain totally, it has made life more bearable (although he also takes Feldene) the most important thing it has done has aborted the progression of the disease. Ben still has pain every day and all the time, but this is a far cry better than where he was before he was on Enbrel. We thought about Humira last spring when he was having problems. The doctor told Ben that the biggest problem with Humira is that "the shot burns like a son of a gun." The doctor told us that the shot burns for 2 full minutes, and people we know who have tried it all agree. Some can tolerate it, but others have gone off the drug because of the injection being so painful. I think you need to speak with your physician about the issues with humira. Many people do improve on the drug, but if I had to chose for my kid, I would go with Enbrel first and only if that failed to help would I make the switch to Humira. I wouldn't be too nervous about the Enbrel shot. It really is not too bad. There are side effects to all medications, but in our case, there was no choice but to take the risk. The alternative was too awful. Good luck and let us hear from you.

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TerryB

Posted Tuesday, December 09, 2003 5:51 PM

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Last Login: Thursday, July 31, 2008 12:31 PM
Posts: 630, Visits: 0

Janie, you might want to post on the arthritisinsight.com message board. Don't bother with the JRA section because it is not very active and there are few children on Humira. Post on the "Rheuamatoid Arthritis" section. The people are extremely nice and helpful. I guarantee that you will get responses from people that actually use Humira. Terry

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Collette

Posted Tuesday, December 09, 2003 9:06 PM

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Last Login: Thursday, July 31, 2008 12:27 PM
Posts: 5, Visits: 0

Dear Janie, My daughter was dx when she was 10 (finally) with JRA and spondalaropothy (AS). She hurt so bad day and night. She was swelling so bad at times she would lay down and i would put ice packs on every joint! She tried all the "other" meds and was put on Enbrel almost 2 years ago (she's 17 now). It's an awesome drug. Yes, there are needles, but they are so small. Giving her some of the responsiblity and well, just giving her the choice of what to do is good, but sometimes we have to decide for them. My daughter is older now, but I remember those years of sprained ankles and everything else...thought we'd never make it through! I consider Enbrel a blessing. Oh, and Jade..well, she had to quit Cheerleading, but got very involved in other things! Oh yes, she was angry, but we both got over it. It's good to have someone to talk to. The AJAO meeting are awesome, look into that. If you wanna yak..holler at me Smile

kajunstar@usa.com Collette

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LisaMarquis

Posted Wednesday, December 10, 2003 10:34 AM

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Last Login: Thursday, July 31, 2008 12:31 PM
Posts: 79, Visits: 0

Janie, My daughter, Arianna, who is 3 was diagnosed in August and started Enbrel in September. She is currently taking 1cc 2x week of Enbrel. It is amazing how brave these kids can be. She tells us that she will be brave and not cry. Most of time she only frets for a moment. Twice a week may seem like a lot, however for Arianna it provides consistency for her as she knows when she will be getting her medication. Enbrel is easy to learn how to mix and administer. Arianna went from 26 inflamed joints at the time of diagnosis to 5 at the beginning of November. We are very pleased with her progress. She started off at .5cc 2x week and after one month was not responding, within two weeks of the higher dosage we notice a major improvement in her mobility and mood. The biggest draw back to Enbrel is that because it is an immunosuppressive drug if Arianna has a cold or other illness she has to skip a dosage. We just recently had to skip three consecutive doses because of sickness. Please feel free to e-mail me with any other questions or if you just need a hand to hold. cmarqui2@maine.rr.com Thinking of you, Lisa - mom to Arianna and Griffin

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