My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Saturday, June 18, 2011

New Drug & New HOPE for the Sloan Siblings

  Finally.... the day has come where FDA has approved the first therapy for children with Systemic Juvenile Rheumatoid Arthritis.  April 20, 2011, The U.S. Food and Drug Administration  has approved the NEW biologic drug- Actemra or tocilizumab.   Actemra's approval for this drug comes after a study of  only 112 Systemic JRA children between ages 2 and 17. Eighty five percent of those children  who got Actemra had at least 30 percent improvement. It may not sound too exciting, but as a parent who now has TWO children who have Systemic JRA-- It is better news to know there is possibly HOPE!

I often struggle with to share or not to share our JRA journey.  I'd like to put make up on, get dolled up and walk out the door like "Life is Good".  But for the Sloan family that is far from the truth. Although, Jake and Hannah may look  great and may certainly not act sick........ Let me say simply..we have MANY stories behind those smiles!  The stories are what I choose to keep personal for the most part.  Do you really want to know my husband came home this week , unable to talk and was gagging until he threw up. Yes- the news that our son, Jake , is also SYSTEMIC just like our daughter, Hannah.  And that we are now going to TRY another NEW drug that only 112 children tried! 

Trying to get excited about the opportunity for  Jake and Hannah to both get their first Actemra infusion on July 5, 2011. Actemra is the first drug to block the inflammatory cytokine IL-6 or interleukin-6, which also plays a key role in driving the inflammatory process. It is administered as an infusion- every 14 days and preferably in combination with Methotrexate.  Jake is currently taking Methotrexate , but we choose to discontinue it for Hannah about 2 years ago. ( Hannah was unable to tolerate it regardless of how much we lowered the dosages, added leucouorin and Zofran, ect....)  So the thought of Hannah & Jake both on MTX ...  let's just say it literally makes me sick!  Side affects of Actemra appear to be very similar with the current Biologic's that Jake and Hannah have been taking ( Enbrel, Remicade, Oriencia). I guess we can deal with extra colds, upper respiratory infections, headaches, sore throat, congestion, and diarrhea.  But what I  HOPE does not occur is the potentially deadly condition known as MAS (macrophage Activation Syndrome).  MAS is a complication of systemic inflammatory disorders in children like Jake & Hannah that involves overactive immune cells  and can lead to "trouble" very quickly! This is always my fear when Hannah gets sick, and now my new worries for Jake. MAS worries me more than the increased cancer risks! Always HOPING & PRAYING for the BEST as we make decisions for Jake & Hannah! 


Monday- I am sending Jake & Hannah to Camp Boggy for 6 days in hopes they will have the opportunity to "forget what they have and feel normal."  They are so excited to go away and be surrounded by kids who all understand and can relate to life- the Sloan Siblings Life! I trust the staff and medical volunteers to take care of my children and all the others who also suffer from JRA.  When they return-- we will take the next step at the Swamp and start our initial Actemra infusion. With HOPE this new drug may be answers to some relief for Jake & Hannah. Then we will re pack our bags to fly out to Washington DC for the JA Conference.
 
Hannah & Jake
Bobby and I are holding on to HOPE that Actemra may help Jake & Hannah.  We appreciate those families and individuals who are continually praying for our children and family.



5 comments:

  1. Heidi and Bob,
    I love your family and I pray for all of you daily. I will direct my prayers to this new drug working for the kids. Keep on blogging, the truth may be hard to write but it certainly helps us target prayers to our heavenly father who CAN make a difference. His will be done! Love all of you!
    Jill

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  2. I came across this page. As a parent of a SJIA child, my heart broke when I heard you have two with the disease.

    Your daughter's sounds so much like mine, it's like I wrote your blog.

    We started Actemra recently, and the response has been DRAMATIC, unbelievably. Ellie had problems that we didn't even know was part of the disease that disappeared. Lymph nodes, GI issue, abdominal distension, eyes, fatigue, and of course joints. All of these we saw immediate changes. The improvement wore off midway throught the first infusion period, but then lasted longer and better for the second infusion period. 3rd infusion is today, and based upon our observations we expect to say goodbye to the symptoms of this disease, hopefully never to see them again. Again, Ellie has been very severe, however the changes have been overwhelmingly dramatic.

    Good luck. I have prayed like a man on death row these days, hardly believing there is any hope at times. This disease humbles us. I hope so badly you are given this miracle.

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  4. Hi
    My name is Jenna and i came across your site. Your kids are amazing, courageous, strong and determined fighter. They are brave warrior's smilen champ's and Inspirational hero's. I wish there was some kind of drug or medication that could help me with my diseases, but I don't know of anything. I am glad your kids are able to try something I am hoping this may be the answer for you. I was born with a rare life threatening disease, it is a debilatating, degenerative bone disease, it effects all of my joints. There is no cure. I have Arthritis, Fibromyalgia, Tendonitis, and Burcitis. I love it when people sign my guestbook. www.miraclechamp.webs.com

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  5. Bad news about Actrema...
    http://www.fiercepharma.com/story/roches-actemra-linked-15-deaths/2009-03-18

    Jenna - my name is also Jenna :) There IS hope and healing for the Sloan Siblings and for you! It is not in a magic infusion or daily pill, but through a commitment to a life-long change in lifestyle and a diet of whole, real, traditional foods, among other modifications.

    My condition has all but completely resolved through natural means (praise God!), and after 35 years of RA (I was diagnosed at 3 years old), I am feeling like a new person!

    Email me at jennalaughter@yahoo.com if you'd like to chat. Prayers for you, and for the siblings :)

    PS - I am a former Floridian, too! I lived in Ft. Lauderdale for 5 years and graduated from UF with a BS degree in Health Science Edication. My parents now live in Fort Myers and we visit yearly!

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