Arthritis Foundation Forum / Juvenile Arthritis / Parents and Parenting / Experience with Kineret? / Latest Posts

RE: Experience with Kineret?

robyn scheuffele — Thu, 29 Oct 2009 12:46:03 GMT

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.

RE: Experience with Kineret?

Jeri Tellez — Wed, 17 Jun 2009 18:19:26 GMT

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.

RE: Experience with Kineret?

Tris9803 — Sun, 07 Jun 2009 15:35:24 GMT

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

RE: Experience with Kineret?

Kristi Tucker — Fri, 13 Feb 2009 00:04:09 GMT

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.

Re:Experience with Kineret?

tootiredmum — Mon, 12 Jun 2006 03:24:00 GMT

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.

Re:Experience with Kineret?

Tana — Mon, 12 Jun 2006 01:54:00 GMT

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?

Re:Experience with Kineret?

tootiredmum — Fri, 09 Jun 2006 00:22:00 GMT

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?

Re:Experience with Kineret?

Tana — Thu, 08 Jun 2006 12:23:00 GMT

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

Re:Experience with Kineret?

TinyDancer — Tue, 06 Jun 2006 20:55:00 GMT

What exactly is Kineret? I have heard of it but do not know much... Can you tell me about it?

Re:Experience with Kineret?

Tana — Tue, 06 Jun 2006 13:16:00 GMT

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

Re:Experience with Kineret?

tootiredmum — Tue, 06 Jun 2006 05:11:00 GMT

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?

Re:Experience with Kineret?

tootiredmum — Tue, 30 May 2006 08:06:00 GMT

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

Re:Experience with Kineret?

tootiredmum — Tue, 30 May 2006 08:03:00 GMT

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

Re:Experience with Kineret?

Sophie — Fri, 26 May 2006 10:41:00 GMT

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)

Re:Experience with Kineret?

Tana — Thu, 25 May 2006 02:09:00 GMT

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

Re:Experience with Kineret?

Susan F — Wed, 24 May 2006 17:19:00 GMT

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

Re:Experience with Kineret?

tootiredmum — Wed, 24 May 2006 09:34:00 GMT

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.

Re:Experience with Kineret?

tootiredmum — Wed, 24 May 2006 09:33:00 GMT

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

Re:Experience with Kineret?

tootiredmum — Wed, 24 May 2006 09:30:00 GMT

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?

Re:Experience with Kineret?

Susan F — Sun, 21 May 2006 19:24:00 GMT

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

Re:Experience with Kineret?

Tana — Tue, 16 May 2006 14:46:00 GMT

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

Re:Experience with Kineret?

ohMom — Mon, 15 May 2006 20:41:00 GMT

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?

Re:Experience with Kineret?

tootiredmum — Sun, 14 May 2006 11:23:00 GMT

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.

Re:Experience with Kineret?

Tana — Wed, 10 May 2006 14:53:00 GMT

Thank you thank you. Ben probably will start it within a week. Great advice!

Re:Experience with Kineret?

ohMom — Wed, 10 May 2006 09:09:00 GMT

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

Re:Experience with Kineret?

Tana — Wed, 10 May 2006 01:34:00 GMT

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

Re:Experience with Kineret?

ohMom — Mon, 08 May 2006 18:27:00 GMT

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

Re:Experience with Kineret?

Tana — Mon, 08 May 2006 17:44:00 GMT

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

Re:Experience with Kineret?

ohMom — Mon, 08 May 2006 12:19:00 GMT

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!

Re:Experience with Kineret?

ColleenR — Tue, 02 May 2006 15:09:00 GMT

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)

Experience with Kineret?

Tana — Tue, 02 May 2006 12:29:21 GMT

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