J at the infusion center for her Remicade

UPDATE-- Infusions are back to every 4 weeks. 6 week intervals did not control the JA or the uveitis. Jordan spent the summer in a constant flare. Oral meds were also switched/adjusted. She can no longer tolerate MTX so she is on CellCept.** Every 6 weeks Jordan, 9, has to have Remicade infusions for juvenile *autoimmune* arthritis & uveitis. She was diagnosed a month before she turned 3. ***There is no cure for these diseases.*** Remission is possible but highly unlikely for J. She has been on Enbrel & Humira but failed both. Current meds include Remicade, methotrexate injections, leucovorin, zofran & naproxen. Despite everything she has been through she is a very happy and positive girl.

She chose the song "Crawling" by Linkin Park because she really relates to this line in the song:

"There's something inside me that pulls beneath the surface..."

Category:

People & Blogs

Tags:

• remicade
• mtx
• enbrel
• humira
• arthritis
• uveitis
• infusion
• juvenile rheumatoid arthritis
• JRA
• RA
• autoimmune
• linkin park

[skunkmaster72]

thank you for all my support!!!!!!!!!!!!

[skunkmaster72]

Thank you for the positive feedback! Isn't it sad how well she does?

Hate when people say "she just has arthritis." Grrr!! If it were "just arthritis" she wouldn't need to do this.

[mrscunningham5]

Oh Jordan, you are SO brave, SO strong!!! You are such a source of strength and inspiration for my Jenna (Bean) and for so many others. You are following God's plan and purpose for your life sweet girl and it's amazing to see.

Stacey, you make the most incredible videos. Keep up the great work!

[skunkmaster72]

@mrscunningham5 I agree and that is what I've old her over and over again. There is a reason to this madness and only He knows what it is.

[Jgreathouse1]

My son London is getting ready to start Actemra infusions after failing Enbrel & Humira & I have always had him watch Jordans videos, he's 5 & brave too & he Loves watching Jordan. Every time he changes meds or gets a new shot we watch Jordan do it first. We always say " Lets see how Jordan does it." Thank you Jordan, for your courage....YOU ROCK!!

[belagracie]

Jordan, you are a sweet girl, and have inspired so many! I know it's not fun having infusions, but continue to be who you are, and you'll be just fine. Pain isn't easy to live with, but everything happens for a reason. You may not ever know what that reason is, but God does have His reason.

[1lglavish]

Jordan you are so brave, much more so than I at 46 years. I have shared your video to many friends on facebook to help with awareness of our autoimmune arthritis.

[Texastines]

Bless her heart. Just a thought...I was diagnosed as having RA, Lupus, Sjogren's, Fibro, etc. - took Methotrexate, Arava, Prednisone, and Cimzia injections. I actually had Late Stage Chronic Lyme Disease. Lyme throws off auto-immune blood markers - I had the Sjogren's ab. Just a thought - hate that she is in pain - I know pain... Lyme does not affect White Cells, but left untreated will turn into Lupus, MS, ALS, etc. I hope she gets true relief - always - hope she gets a cure.

[geepike1]

You are such a strong girl, and I'm so sorry you have to go through this. I also get remicade infusions and although its a great relief it is a very hard day to go through every month. You seem so much stronger than I at 38 yrs old.

[guineawuv]

Jordan, as always, you amaze me!  You're such an inspiration and I'm proud of you for being so brave!

[hotboxtheword]

I'm a JRA patient and have been for almost 10 years now, and this video still had me bawling my eyes out. I wish I could be as tough about my illness as this little girl seems to be.

[KendallMurphree]

I was diagnosed with spondyloarthropathy about four months ago and I have uveitus as well, so I'm starting Remicade in about a week for three to four hours every two weeks.. I understand the feeling of people saying its "just arthritus".. It's so much more than that. It's such a hard thing to grasp, but hopefully with help of therapy and support of family and friends I can learn to accept it. Thank you for this video.. I

[kaughtnkandy]

i just came across your video this am. its so crazy because frm the IV bag i noticed that Dr. Garza is treating her. She is also my 7 yr old daughters doc. My daughter was recently diagnosed w JRA and Uveitis. I'd love to with you and your experiences. right now is a scary time for us. my email is DJohnson723@yahoo.com

[srogers2999]

i just have been dignosed and im scraed dose anyone no what to excepect with remicade