Hi, my name is Laura and my 4 yr old daughter was diagnosed with polyarticular JRA when she was 2. I stumbled upon this website because I've been searching for information on Enbrel. There isn't as much info out there as on the other DMARD's. Her Dr. has wanted to start her on this for over a year. She's tried many NSAID's which have all failed eventually. I have a huge problem putting her on Enbrel for various reasons. Today we are going to see him and I think I'm going to give in this time. I've spent the summer home with my daughter and have really seen her arthritis effect her. She complains about pain more than ever before. She'd rather sit inside than go play outside. When we do play outside she wants to sit down within 15 minutes. I feel like I should try this drug, but I'm really scared about it. Our Dr. is great so hopefully he will make me feel more comfortable about it. It's just so hard to inject your baby twice a week. Any input would be appreciated.
Laura
Lots of us have been on Enbrel, most without any side effects and most with good results. It hasn't worked for me, but Remicade did.
The problem with not starting her is the damage that could be occurring because she isn't getting this treatment. And, that damage is permanent.
I encourage you to give it a try. The injections are not so bad. Plus, they have just developed a new injection pen for Enbrel. See if your doctor can get you this. It will make it a lot easier on both of you.
On this forum, we mostly hang out in the Rheumtoid Arthritis seciton. You also might want to check out the 4ratalk.com forum. There are several people there that have lived with JRA all their lives and they can be very helpful.
We also started a new forum www.vfll.com. This forum and the 4ratalk are both moderated so that we don't get spammers.
My sister has a special needs child and she struggles with all the treatments and surgeries that her little girl has. But you have to do it for them because they can't do for themselves.
I know this is very, very hard. But Enbrel could make an incredible difference in your daughter's life. A lot of people gain function back, have much less pain and the best thing is that if it works for them, it stops the disease progression. That's what you want.
Please keep us dated and good luck.
Thanks Deanna,
She's going to start Enbrel this Thursday. Her other treatments haven't worked so I hope this does. I'm still nervous about it, but we'll see how it goes.
Laura
Hi Laura, having tried almost all of the DMARDs out there I too would feel more confident about trying Enbrel over any of them, especially with a young child - the longterm side effects of some of the other meds are quite worrying, but Enbrel seems a lot less 'toxic' if that makes sense. I know it must seem difficult to think about injecting your young daughter, but one day she will have so much to thank you for because if it works, you will be helping prevent the irreversable joint damage that could set her back in the future. I've had JRA since the age of 3 and know my mum had to do some tough things for my benefit when I was so young, but the result of that is we are very close, she's my best friend and I love her for all those things.
I hope your appointment with the doctor goes well, I'll be thinking of you. Keep us posted if you can,
Take care both x
Thanks guys,
The idea of injecting her is really freaking me out right now. Her first shot is tomorrow morning. I just picked up the Enbrel from the pharmacy and started to read the instruction and precaution sheets. This is very overwhelming!
Laura