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tootiredmum
Posted Tuesday, June 06, 2006 5:11 AM


 

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Hi susan
Just wanting a friendly ear! I posted a few weeks ago about kineret and I know from your post Max was on it last year. Aiden has been on it 3 weeks but has had a severe site reaction, bad enough for the rheumy to suggest to go off it.She is now talking thalidomide or cyclosporin but i don't know much about it. can you give me some advice?
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Tana
Posted Tuesday, June 06, 2006 1:16 PM


 

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Hi Lydia: So sorry to hear Aiden is having a rough time with kineret. We gave Ben only one shot in the tummy fat and it did swell quite a bit. He prefers the shots in the back of his upper arm. I wonder if that would be any better for Aiden. I have read that these reactions usually diminish after a while. I hate to see him switch drugs again so soon. Keep us informed. Tana
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TinyDancer
Posted Tuesday, June 06, 2006 8:55 PM


 

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What exactly is Kineret? I have heard of it but do not know much... Can you tell me about it?
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Tana
Posted Thursday, June 08, 2006 12:23 PM


 

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Kineret, aka anakinra is a biologic drug in the same pharmaceutical family as enbrel, remicade, humira. Kineret is different than the others because it blocks the production of a certain protein in the immune system called IL-6. The other drugs block the TNF protein as I understand it. Basically it is another immune-suppressant that keeps the body from over-reacting and going into an arthritis flare up. Kineret is given as a daily injection in pre-filled syringes. The shots are painful but my 13 yo son is used to it now. Hope that helps. The only kids I know that are using Kineret are the systemic onset JRA kids who are notoriously difficult to treat effectively. Tana
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tootiredmum
Posted Friday, June 09, 2006 12:22 AM


 

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Thanks Tana, I feel the same way about switching drugs so soon. Do you find Ben gets less reaction in the arm and is it any more painful than in the stomach/leg?
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Tana
Posted Monday, June 12, 2006 1:54 AM


 

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Hi: Ben's site reactions have calmed down a lot now. We always give it in the front or back of the upper arm. The one time in the tummy fat was much more painful than the arm. Did they take Aiden off it?
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tootiredmum
Posted Monday, June 12, 2006 3:24 AM


 

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Thanks Tana.Yes the rheumy suggested we stop and go back to enbrel for now. she is away at the rheumy congress in amsterdam for 3 wks and then we will reassess things. he still isn't feeling back to normal, and still on 30 mg predn daily. we'l wait and see.i'd like to try the arm and see what reaction he has there,but we'll wait till rheumy returns.
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Kristi Tucker
Posted Friday, February 13, 2009 12:04 AM


 

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Hi my 2 yr old son started kineret (systemic jra) in december. it has been working so far. It's the first thing we have tried and he is also on 5ml of pred. down from 10 so we are crossing our fingers for good news once we get him off the steroids.
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Tris9803
Posted Sunday, June 07, 2009 3:35 PM


 

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Hi, my son has systemic.  He was diagnosed three years ago.  He is now 12.  We have run the roller coaster and are now using Kineret.  We struggled A LOT when it was time to switch to Kineret.  His doctor had warned me early on that this may be the route we would need to take, but daily injections were the last thing we wanted.  My son hates the shot every time, and still cries 90% of the time.  Like most, he gets over the pain quickly knowing that he would be miserable without the med.  We have a routine that we have worked and tweaked over time.  I wake him in the morning with ice, he ices for 15-20min, we do the shot, he recovers then we start our morning.  I/we found that when we did the shot at night he would work himself up too much before the shot time.  We have been using Kineret for almost a year now.  He skips a day every fourth day (three shots than skip a day).  We just needed a reprieve, initially we tried every other day--didn't work.  Just remember that quality of life is most important, they need to enjoy their childhood.  My thoughts go out to you, I know this is a hard time for you.  I have been researching Tolizumab (spell?) and I'm optimistic that this may be another option for systemic kids who do not handle daily shots well.  Just waiting for the final trial results/approval.

Best wishes,

tris9803/son systemic 12yrs old

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Jeri Tellez
Posted Wednesday, June 17, 2009 6:19 PM


 

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My son (11, systemic) started Kineret in April and it has literally been a lifesaver.  He was in ICU with fluid on his heart and lungs, which quickly subsided after he started Kineret.

We tried icing the area when he first started getting it, but found that heating the area actually works better.  I think because the medicine burns, it's less noticable if the area is already warm.  Anyway, we played with several things before we found just the right cocktail of coping mechanisms.  We put on his favorite CD, gets on the laptop, has his feet dangling to help him relax his legs, and pops a Jolly Rancher just before I swab the area.  Also, his favorite stuffed bear is crucial.  I totally agree with letting the vial warm before injection.  My diabetic sister told me that trick, as she does it with her insulin.

His improvement did plateau after a few weeks, but we added methotrexate, which does help boost the anakinra.  By itself mtx did nothing, but combined with the anakinra, helps a lot.  He has had good improvement since mid-May.

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robyn scheuffele
Posted Thursday, October 29, 2009 12:46 PM


 

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Hi:

I've been taking Kineret since February for a different, rare, condition. It started out as a wonder drug, but plateaued after a few month. Still - it's far better than anything else. When injecting into the top of the thigh I did have bad reactions, and still have a few large red marks as permanent scars, I think. But, since then the company has started using rubber for the needle covers instead of latex, and that reaction subsided, if not went away. So, I think part of the problem was a reaction to the latex. Also, I use just a tiny bit of antibiotic ointment over the injection site, and I think that also helps. Overall, I now don't get reactions, or if I do it's barely noticeable; however I now only inject into the butt and stomach - so it could also be a factor of where it is injected.

Hint - I heat up my needle for a few minute while I am in the show. I put on my bathroom fan heater and put the needle about a foot away, get into the shower, then inject when I get out. It hurts so much less, or not at all, when it is nice and toasty. However, if you heat it too long it will become cloudy and then you won't be able to use that needle. With practice, you get to know "when it's ready".

Hope this helps.
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