Hello everyone

%d comments
  • Hi Tanya. Please ask your doctor about kineret. It really helped my daughter without side effects. I hope you find something that works soon!

  • Hi Tanya Smith-Mangold, my daughter has JIA along with Macrophage Activation Syndrome (MAS), been helped by kineret. The daily injection part isn't pleasant but the relief out weighs that. Hope she gets some relief soon. This is a great group to be a part of!

  • Thank you so much everyone ;0)

  • I agree with Toni & Bonnie. Kineret is a daily painful shot, but if it works the benefits far outweigh the five minutes of discomfort from the shot. It worked within hours for my dtr. However, I know some drs won't give this drug or other biologics either.

  • I will certainly be asking! She still had a horrible headache when she went to bed last night :0(

  • Kim, do you know why some doctors won't give biologics?

  • Some of them are just not comfortable prescribing them. And for one, Kineret hasnt been approved to treat pediatrics. It's only approved for adult onset or Stills Disease. So they don't have a pediatric dose approved. However, it has been recently approved for a childhood genetic disorder called CINCA and NOMID which are rheumatoid type diseases. So maybe some will start getting more comfortable with prescribing it. Another reason is some insurances won't pay for these drugs unless you have followed a set order of medications. Starting with the most obvious first like NSAID's and steroids. Then moving up the ladder.

  • Thank you for the info Kim. I guess we are lucky since our doctor started with kineret.

  • Yes our dr did too. She is a big advocate of Kineret. The doctor that discovered the relationship between SJIA and the IL-1 protein that Kineret blocks is one of our rheumatologist's colleagues. You can google her. Her name is Dr Virginia Pascual. She works at UT Southwestern in Dallas, which is where our rheumatologist teaches.

  • Hi Tanya- Just wanted to say welcome! I have a 14 year old daughter - diagnosed SJIA at age 3. We've done mots of the biologics - including kineret and actemra, which are both highly recommended for systemics. Hope I can help if you need it!