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Experience with Kineret? Expand / Collapse
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Tana
Posted Tuesday, May 02, 2006 12:29 PM


 

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Hi everyone: my Ben (seems like there's a lot of Ben's with this disease here ), is down again with a flare of his systemic jra. The doc re-increased his MTX (together with Enbrel) last visit because he was going downhill consistently. Now it looks like he may have to start Kineret (anakinra) shots next month. Who's had experience with these? I heard they hurt and I know you have to administer every 24 hours. yuk. But it's the only approved IL-1 inhibitor out there right now. Comments? Thanks, tana
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ColleenR
Posted Tuesday, May 02, 2006 3:09 PM


 

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Hi Tana-
My daughter Caitlin tried kineret. I hate to confirm - but they were pretty painful and there's not much you can do to mitigate it. The base of the medication is citric - so it burned below the skin. Ice and Emla didn't seem to help a whole lot - and in her case, she didn't have the patience to wait - she always wanted to get it over with. And even though it did not work for her - I have to tell you that I know of several systemic children who have had great results! Control without prednisone - more energy - no more inflammation. I'm not sorry at all that we tried it and I would do it again.

There was a study published last year from Scottish Rite in Texas - and they also showed great results for systemics. If you try it - I hope it turns out to be the magic combination for Ben.
Best hopes for you-
Colleen (mom to Caitlin, 8, systemic)
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ohMom
Posted Monday, May 08, 2006 12:19 PM


 

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Hi Tana -- my daughter Paige age 9 has been on Kineret for about 17 mos now. yes it burns, her nurses suggested we didn't tell her that b/c it's not 100% burning for everyone and maybe she'd be lucky. not so, and she still talks to this day about the shock of the burn that first injection. anyhow -- i quickly made it routine in the morning; ice pack on area while i prepare the injection, you'll have to inject it into a sterile syringe for accurate dosing, not hard just another step. we have found pinching the skin really taut helps with the needlestick, then push it in as quickly as you can. we have tried counting (she'll count 1-2-3) and other distraction techniques. they work until she bores of them. some days it doesn't seem to bother her now, on occasion it still burns. what I do is hugs her briefly, let her have her time to get through it; but then just as quick when i sense it's mostly past get her going on something else and we just move on.
be aware too it's very common to have site reactions when you first start Kineret. Paige had hives at the sites for a week or so. i think we gave her benadryl.
all in all Kineret is her wonder drug, she knows this and honestly felt that much better that quickly she knows that she needs to be on it. hopefully your son is old enough to put that together too and my prayers that it does wonders for him.
also -- don't use the prepackaged kineret syringe also b/c the needle is horrible! it's not as sharp i guess b/c when we tried it it was very hard to break the skin which hurts!
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Tana
Posted Monday, May 08, 2006 5:44 PM


 

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Thank you so much for your responses. It doesn't seem like too many kids are on this one. What kind of arthritis does Paige have? Ben missed the whole week of school last week with tons of pain and lethargy, fatique typical of systemics. He's back at it today but I'm worrying because his systemic rashes have come back too and we haven't seen those in almost a year. Thanks for the great advice on Kineret.
Take care, Tana
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ohMom
Posted Monday, May 08, 2006 6:27 PM


 

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sorry i forgot to mention -- she is systemic JRA, her biggest struggles are fatigue and ankle pain. she still struggles with morning fatigue but often can get to school by 10 a.m. or noon at the latest. in 2nd grade she missed a total of like 30 days, not sure how many of those were 1/2 days. i'll be curious to see her total this school year; she started the kineret mid-2nd grade and is in third grade this year
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Tana
Posted Wednesday, May 10, 2006 1:34 AM


 

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Yep, I thought she was probably systemic. Seems like these kids are very hard to treat effectively. Looks like Ben's going to be starting very soon. I'll let you know how it goes. Thanks again, tana
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ohMom
Posted Wednesday, May 10, 2006 9:09 AM


 

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Tana -- i was preparing Paige's injection this morning and remembered something important; though your nurse should tell you. Be sure to set out the kineret syringe to warm to room temperature b4 injecting, it helps ease the sting. I have been told anywhere from 30 to 60 mins prior; so I called the kineret hotline and asked how long it could sit out. It can be out of the frig for 24 hours b4 not good so I try to set it out an hour each morning. if we have a really early morning (like traveling etc) i will even set it out the night before.

FYI -- paige did try Enbrel and it didnt' do much of anything for her
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Tana
Posted Wednesday, May 10, 2006 2:53 PM


 

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Thank you thank you. Ben probably will start it within a week. Great advice!
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tootiredmum
Posted Sunday, May 14, 2006 11:23 AM


 

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Hi everyone.I was wanting to talk to other parents whose children are on kineret. My 9yo son has had systemic jra since 14 mths old and diagnosed age 3,starts kineret tomorrow and I am very nervous after all I've read about the stinging /rashes etc. Would love to hear from other parents. I'm from Adelaide south Australia. Aiden is on enbrel, mtx, prednisone, mobic, and was previously on remicade and methyl prednisone infusions.
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ohMom
Posted Monday, May 15, 2006 8:41 PM


 

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tana -- keep us posted on how it goes

tootiredmum -- any chance we have emailed? at one time i corresponded with a mom whose son was Aiden? anyhow -- what else can I tell you about Kineret to ease your fears? oh wait, did Aiden have his first injection today? how did it go? a big thing for me is my reaction to it, if i get anxious and stressed then Paige picks up on that and takes it on herself. now mind you she gets anxious and stressed on her own but i do think my downplaying helps get through it and move on. i guess my point is the injection itself is not a positive experience, and may never be. but the results from the medication far outweigh the negative time. the quicker you can make it routine and quick, the better. Paige has been on just about everything you listed except mobic and remicade. infusions are no fun either so you have some experiencing in not letting it ruin the day kind of situation to know what i'm saying I hope?
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Tana
Posted Tuesday, May 16, 2006 2:46 PM


 

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I gave Ben his first shot of Kineret last night. It hurt more than he thought it would and he got tears in his eyes, but I pointed out that within 5 minutes the pain was totally gone. He seemed brightened by that. I told him I would get a bag of mini candy bars so he can have one with each shot (he's way skinny so this is okay I think) so at least he has something to look forward to. Now we just have to hope it helps. He's feeling pretty hopeless these days but I'm encouraging him to be positive. tana
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Susan F
Posted Sunday, May 21, 2006 7:24 PM


 

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Hi,
My son Max was on Kineret last year, although we saw a bit of improvement it just wasn't enough. The injections for Max were also painful but became a part of life. Now he has been on Cyclosporin, Meth, and pred and IVIG and it did work for about 10 months but he just went into a flare, so we are going to start on Thalidomide.
I hope the Kineret works, I also know of a few kids that have had great results with it.
Susan
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tootiredmum
Posted Wednesday, May 24, 2006 9:30 AM


 

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Thanks oh mom, susan and tana.
I appreciate the info. Aiden is now into week 2 of the injections and while he doesnt like them, other than the first 3 nights when he cried, he now grits his teeth and gets it overwith quickly. He administers it himself after I've drawn it up, so he feels quite independent about it. Thanks about the tip of the ice pack b4 and after. He now does that as routine and it definitely takes the edge off. So far, no site reaction and best of all, he has neck movement which he hasnt had for 3 YEARS and is able to squat to the floor. I was told it would be around 8 weeks b4 we would see any change, so I'm not sure if this is coincidence, but honestly, I'm just relieved something good is happening for a change.
How old are your kids and how long have they had jra?
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tootiredmum
Posted Wednesday, May 24, 2006 9:33 AM


 

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Tana. it sounds like Ben had his first kineret shot the day after Aiden started his. Would love to keep across how he is going and compare notes if you don't mind? thanks
lydia
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tootiredmum
Posted Wednesday, May 24, 2006 9:34 AM


 

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Hi oh mom
I'm not sure if I have emailed you b4. I was on this board a while back and have only just returned. Aiden isn't a common name so it could have been me. look fwd to future posts.
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Susan F
Posted Wednesday, May 24, 2006 5:19 PM


 

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Hi Lydia,
My son Max was diagnosed in Jan 04. He has systemic JRA, and it has been awful to treat! As I am sure you know! Anyway, we are starting Thalidomide this week, we are praying this will be the one!!
I am glad the injections are going well, kids are so wonderful and they adapt so much better than we do! They are certainly troopers.
Susan
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Tana
Posted Thursday, May 25, 2006 2:09 AM


 

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Hello all: Glad to hear Aiden is doing okay so far w/Kineret. Ben is doing fine too. He has gotten a small rash/site reaction the last few days but no big deal. Looks almost the same as the systemic rash. Ben became acutely ill in January 2004 when he was 11. Diagnosed a few months later with systemic jra. Seems that these systemics are the absolute hardest to treat. He got off prednisone after about 18 straight months which I consider a huge success. Continued with metho., enbrel and sulindac until now. He actually got a lot better on this protocol but since last December has gotten steadily worse again. blah. So he's 13 now, graduating 8th grade in two weeks and the poor guy is so hopeless and despressed. I just want my boy back. We do exercise, acupuncture, psychologist and now he's been referred to the pain clinic to help solve his horrible daily headaches. anyway, must get to bed now. Let's stay in touch please! tana
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Sophie
Posted Friday, May 26, 2006 10:41 AM


 

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Hi Tana,
Lindsay also gets terrible headaches that worsen when her arthritis is flaring. My husband has occasional migraines, and migraines tend to be hereditary, but the connection between headaches and arthritis is interesting.
Sorry to read that Ben is flaring. It is so frustrating that systemic is so hard to treat. My almost 6 year old is on 20 mg MTX, .4ml Humira and Naprosyn and still has symptoms. Granted, she is doing okay on all of this medicine, but I feel like if we are taking the unknown risks and giving her the quantity of meds she is on--she should be able to enjoy freedom from the disease. When we are considering meds, always in the back of my mind, I am thinking "and it may not even help."
Take care--I am hoping the Kineret really works for Ben.
Sophie
(Lindsay's mom, systemic jra)
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tootiredmum
Posted Tuesday, May 30, 2006 8:03 AM


 

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Hi Tana
Just checking in to see how things are going. Aiden also started getting a site reaction just 2 days ago but today is still red but not itchy or raised. Have you noticed Ben feeling better or not? I spoke to Aidens rheumy and the other child in our state who is trialling kineret,has actually pulled out because she said it was too painful. Poor thing! So Aiden is the sole guinea pig at this stage. Reduced his prednisone today to 15mg daily.fingers crossed.
Power to all mums!Lydia
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tootiredmum
Posted Tuesday, May 30, 2006 8:06 AM


 

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Hi susan
I am sending you positive 'vibes' for Max hoping that Thalidomide will improve things. Aiden was offered the same but I don't know much about it. At least its another option if kineret doesn't help. How old is Max?
Lydia
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