Is there anyone out there taking Annikinra and has it helped???

My son was diagnosed with TRAPS at almost four years of age. He is now six and living a drastically improved life, since he started Etanercept. That being said, he has been hospitalized three times in the last year due to acute flare ups. The last time was just a few weeks ago. He came into contact with Strep A and that was his trigger for the lastest attack. Typical children do not end up in hospital due to Strep throat infections but his body dries up so quickly with an overresponsive immune system that we now just go in before he turns into a dried up, acutely sick, in pain, little person. We are getting better at helping him not suffer through his flare ups. That also being said, he does have a tough time with his legs, feet, arms, fingers, arms, and back all aching as he is trying to not flare. He also has a great deal of difficulties with headaches and what lately has been happening is his eyes are becoming red and irritable looking periodically as well. So, all of this has been leading the rheumatologist team that heads our son's care to wanting to try Annikinra for him. My question is, is there anyone out there who is currently on or tried Annikinra to treat their child or themselves? I have heard that there is some trouble with burning when the meds. are injected and site sensitivity, as compared to Etanercept. Our other trouble is that our son is very little. He is only forty pounds. There is no way we can use his little tummy as a site for injections, that only leaves his arms, which are also thin and his little legs. I worry about him being so little and trying a drug that has no clinical trials on children under the age of eighteen. It's only been on the Canadian market since 2005. Or at least that's what I have read. As it was presented to me, there is a good to excellent chance that my son will do better on the Annikinra. I just worry about all the unknowns. Sometimes the evil you do know is better than the one you don't. If anyone can offer any information for our family I would greatly appreciate it.
Karen

By rybrans07
Posted February 8, 2009 at 9:31 am
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Dear Karen,

My daughter Sarah is 5 and she has FMF. She ahs failed most treatments and has been on Anakinra for 6 months now. She has had some improvements, she no longer suffers daily with joint and muscle pains, but her flares with high fever haven't gotten much better. She still has occasional headaches and her eyes also get very red and watery with flares and even sometimes in between. Sarah has a feeding tube and is only 32lbs. The medication does burn. I ice her arm for about 20 minutes before injection and I also transfer the med from the prefilled syringe to a smaller gauge needle syringe. I end up wasting half the med, but honestly I don't care. She can only take 50mg anyway. The doctor gave me a script for insulin syringes with a much smaller needle. She does get injection site reactions, but not that bad and they always go away. If you have any other questions you can contact me directly at 518-589-7851. Good Luck with everyone and I hope it all works out. Kim

By nannysandm
Posted February 8, 2009 at 6:53 pm
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Hi Karen

What part of Canada are you from. We live in Ontario.
My Grandson has NOMID and has been on Anakinra for over 3 years. He is now 5 years old. He will only let us inject in his arm which after 3 years is still showing no signs of damage. We would like to change the site but he is rather determine. He usually fusses for a couple of minutes after the injection. For him it has been a miracle drug and there have been no problems. He is in a clinical trial at the NIH and there are many other children using this medication. Some as young as 6months.
If would would like any more info please do not hesitate to contact me.

Jocelyn

By Kare
Posted February 8, 2009 at 7:19 pm
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We are from Vancouver, B.C.
That's amazing that your grandson is only using one site and he hasn't had any issues! Does he use a topical anesthetic before his injection? My son does and it helps the whole process go very smoothly. I am hoping with daily injections that we will not lose his calm and cool response to having needles.
We also use the smallest gauge syringe that we can. I had heard the ice trick as well. We havn't used that trick because the cream works so well with Etanercept. He doesn't even flinch.
I can't tell you how much I appreciate both of your speedy responses. It helps to hear from people who actually are using Annakinra on children so close to my own child's age.
Much appreciated,
Karen

By nannysandm
Posted February 8, 2009 at 8:21 pm
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Michael did go throught a period of fighting us he would scream and kick and we tried the anesthetic
but I think it was more emotion than the pain he was experiencing. He now asks for his poke when he gets up each day. He just turned 5 and he asked if when he turns 8 like his brother will he not have to have his poke anymore. Some times it just breaks your heart.
Have you been to the NIH? or are your doctors treating you there?

Hope your little one is well and if you decide to use the anakinra it works for him.

Jocelyn

By Kare
Posted February 8, 2009 at 11:30 pm
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Owen has always been amazing at taking his needles/bloodwork etc. Once people started to honour what he was saying, that is. He kept telling the blood techs. not to squeeze his skin with the elastic band thing. He kept asking to have his shirt pulled down until they listened. He has always been an amazing advocate for himself. He is an older soul than I will ever be. My problem is, he will forget some of the memories (I hope), I, on the other hand, will not. My heart has been broken many times by Owen's struggles, yet I try not to let his medical condition overtake his whole life.
Funny that Michael calls his needle his poke, so does Owen, or other times it's his pokey. It's a way of life for him.
We have never gone to NIH. We have been lucky to be treated here in Vancouver. We just happened to have the wisest, most incredible rheumatology specialist head Owen's team when this whole journey started. I can remember Dr. Petty arguing with an infectious disease doctor, who thought Owen had a periodic fever disorder, about which p.f.d. it was. Dr. Petty called TRAPS at the very onset of everything. It was the last thing they tested for, and it took the longest to get the results for. Dr. Petty was right in January, 2006. It took until August 2006 to prove it. We have a fabulous team that follows him here, as well we were lucky to get the pediatrician we did. She is amazing and she advocates very loudly for the things Owen needs, above and beyond the call of duty. She has come into hospital on her days off, as well as returned my calls at a moments notice. Then there is our Mary Pack Arthritis Center who follow Owen to help him develop strength to help his little body deal with always being under attack as well as recoup after an episode, plus trying to catch him up from the two years he missed in his gross motor skill development as a preschooler. It all takes a toll. One thing leads to the next, and we as parents must advocate, advocate, advocate. We are just lucky we have a team of people who have heard what we have said. Owen is the only child at our Children's Hospital who has been diagnosed with TRAPS but I couldn't second guess his care at all... Thus, the reason we are going to go ahead with the change in his meds. All the people we trust are saying to do so. I do believe that they have Owen's best interests at heart. So, time will tell what happens. We still have to get the med. approved for him by MSP which is no small task indeed.
I am so appreciative of your responses. I hope all is well with your families.
Take care,
Karen

By nannysandm
Posted February 9, 2009 at 9:12 am
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Karen

How I envy you and your son and the team of doctors you have. I cann't count the times we cried in the emergency rooms and doctors offices asking them to help up find out what was wrong with Michael. We realize that it was not an easy diagnosis but they just didn't believe there was anything wrong. He was so small and in such pain. Even after the diagnosis and we asked the pediatrician if he would be willing to care for Michael and he agreed. The minute Michael would have a flare and we would bring him in the Dr would say I don't know anything about NOMID what did the NIH say. It became a power strugle.
Presently we are getting the Anakinra through the NIH because he is in a clinical trial. We fear the day the trial is completed and we have to find a way to get the drug in Canada.
We have been working with CORD the Canadian orginiaztion for Rare Disorders to advocate for patients like us. I understand that BC is very compassionent to their patients with rare disorders.

Does your rheumatologist have any names of Dr's in
Ontario. We are desperate to find a team to look after Michael.

Take Care
Jocelyn

By nannysandm
Posted February 9, 2009 at 9:21 am
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Karen

If you go to the website www.nomidalliance.net you will see lots of info on all the periodic fevers.

I have copies of the Brochure that you can see on line
If you would like so copies I would be please to send them to you. It has info on TRAPS as well and I find it helpfull even to give to teachers and family members
so that they understand better the situation.

Jocelyn

By piy
Posted July 23, 2009 at 2:51 pm
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My daughter was diagnosed with nomid in May 2009. She turned 1yr on july 14 2009. However, she started having sever rash and fever in oct. 2008 and our family doctor was not worried at all. It took us few visits but her pediatrician finally refered us to sick kids hospital for further chekup. There Dr. Laxer from rheumotoly diagnosed her with nomid as soon as he saw her history and started her on Anakinra. She has been on Anakinra since begin of june and seen a huge improvement. Dr. Laxer also helped us join the clinical study at NIH. We were at the NIH in mid june for two weeks. From talking to doctors and others, my daughter was diagnosed and started treatment on time, however no one knows how her health will be in a few years from now. She has fallen approx 6 months behind in her gross motor development. we are trying to teach her to crawl and move around by putting weight on her knees. She is not comfortable putting alot of wight on her knees. I would greatly appreicate if someone out there could share their son/daughter story with nomid and how they have coped.
Thank you.
Piyush

By Mom_of_SAPHO_child
Posted July 24, 2009 at 12:44 am
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Hi Karen, my name is also Karen and my 6 year old son has SAPHO Syndrome. He takes a few different drugs and one of them is Methotrexate by injection and I use the Emla cream to numb the site first, works great. Rylee is also a small 6 year old weighing only 37 pounds so I understand what you mean about the arms being small but this is the only place that he will take the shots....Anyway I have a friend with a 2 year old boy with a rare disease that has been taking Anakinra injection for about a year now and he is doing so much better now on it. One of the meds that my son takes 3 times daily is an adult drug that is not used a whole lot on children and it scares me to death to think about the long term effects of it. The sad thing is that most of us parents are all in the same situation and have to take risks in order to hopefully make our children more comfortable and all we can do is research it as much as possible and hope that we are making the right choices. I wish you and your family the best health possible.
P.S. I am from Newfoundland and will be returning to the NIH on August 1st.

By jacksonba
Posted September 5, 2009 at 3:45 pm
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Hi Karen,
I just joined on here and saw your request for information on anakinra (kineret). I am 25 years old and was diagnosed by the Mayo Clinic about a year and a half ago. I did not respond to enbrel. My rheumatologist at the univ of tennessee is very conservative but felt anakinra would be a good choice for me because it has shown to be effective and safe in children (I am 5`1 and only 100 pounds). It helped the fevers right away. When I do not take the shot (when I become sick with a sinus infection for example) the fevers come right back and last and last. However, it has done very little to help with the pain and fatigue and on really bad days fever can still break through. I don't know where I would be without this drug although I am struggling in a way I didnt know even existed. I had to leave medical school after the first year because I became sick. My background is in immunology. So in some weird way I feel God better prepared me to understand what I am going through. I am currently trying to be seen at the NIH. I was interested in being seen at the cleveland clinic but I keep running into red tape. It seems the pediatric rheumatologists are the ones to see but they will not see me because I am no longer a peds patient. Best of luck with the anakinra.
~Angela

By alyse09
Posted September 6, 2009 at 3:58 pm
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Hi my daughter Alyse has been taking annikinra for three months now and we are currently in the hospital for a flare up. We have found this medication to be of little use for her but we know of several people who have benifited from it. We have had more luck with high doses of steroids. I have found that using emela creame to numb the area prior to injection has been quite useful. Alyse dosen't mind so much after the area is numbed. Alyse is also very small she is seven and weighs 37 pounds. We would very much like to hear from other people with peroidic fever syndromes.

By Kare
Posted September 6, 2009 at 11:39 pm
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Hello all.
Thanks so much for all your responses. Unfortunately, for Owen Annikinra was not a helpful drug. We took him off Etanercept April 17th and on the 28th we started Annikinra. Six days later he had a MAJOR flare. The type of flare that we have not seen the likes of since he was three and undiagnosed. It was horrendous, in the duration of his fever and the level of his pain. He was in hospital for eight days. We of course thought that we had not given the drug enough time to get started so we stayed the course. Exactly four weeks later (just like the old days) he had another flare that required hospitalization and narcotics to manage all his symptoms. Then, the rheumatology team increased his dosage. Ten days later, we left the hospital. Fours weeks to the day, another attack. Thank goodness for our pediatrician she pulled the plug on Annikinra.
We did find out a whole lot of things the hard way. Owen must have medication to manage his symptoms. At this point, that medication is Etanercept. Having an attack every four and a half, to five months that requires hospitalization without narcotics, only i.v. therapy, is much better than every four weeks. I think it was a big surprise to many of the specialists how Etanercept was managing the symptoms that Owen has. Etanercept is by no means perfect, mind you. He will go a lot longer between attacks, but he has a lot more "fester" like symptoms. His eyes get puffy, his legs hurt, eventually the g.i. symptoms kick in, he gets headaches. He has myalgias and malaise, but he is not in crisis mode. If that is the option we have than that is what we have to choose. Apparently there are other options on the horizon but now we are all very hesitant to try something new. This is not an experience I would like Owen to have to go through just to try something new. All of his insulation is gone. He is so very, very thin. He has lost a lot of muscle due to the intensity of his attacks. He has lost a lot of stamina as well. What he has not lost is his spirit and all those who come into contact with him notice that he has something special to offer. What that is no one knows at this point. He is an amazing little advocate for himself. He is happy and resiliant and continues to face the world with a smile. We are truly blessed to have him and his gifts.
Again, thanks for all your commnents. I should start another discussion to see if anyone else has had a similar experience when trying new medications for TRAPS.
Take care everyone,
Karen

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