Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi Barb, My son was 2 1/2 when he was diagnosed with poly jra and just turned 3 when he started enbrel. It was a miracle drug for us. Not one negative effect. ly, mtx scares me more than enbrel does, because it supresses the entire immune system not just the protein (or whatever it is called) that causes inflammation like enbrel does. Don't be scared. My son needed agressive treatment as well, but enbrel was hard to come by when my son was first diagnosed. I didn't think of that drug as something bad, I thought of it as his best chance for remission. I actually switched my son's doctors so that we could get on the enbrel registry and obtain it quickly. I begged my doctor to let my son go off mtx, cyclosporine and other meds when he started enbrel. We got rid of all of his other medications except vioxx when he started enbrel. Within a few months the doctor said he didn't need that either and he has only been on enbrel ever since. Don't look at having to go on enbrel as bad news - think of it as a real chance for her to feel better. Maybe talk to your doctor about weaning her off mtx and the other drugs if she shows signs of improvement. One nice thing is that enbrel usually works very quickly if it is going to work well for someone. If your child is like the majority of poly jra kids, she should really do well with the drug. Good luck to you and don't be upset. This is a positive thing! Robin Enbrel help Hello all!We just got back from our rheumy appointment and got some bad news. e(2 poly) needs to start Enbrel injections. I am having a terrible time withall of this and could really use some support from all of you. She is alsoon MTX, Celebrex, folic acid, and Prilosec.I think she is so young to be on all of these heavy medicines. Has anyonehad experience with and 2 year old and Enbrel? I totally trust my doctor,and as he said today, we need to be agressive with the treatment to preventpermanent damage.What is Enbrel, and how does it work with MTX? What can I expect?Sorry if I sound desperate, but that's how I feel right now.BarbTo leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi Barb, My son was 4 when he started but was only 3 when he was maxed out on 25mg MTX very few adults even go beyond that dose.My friends little girl went on Enbrel 3 months after her second birthday.I agree with Robbin don't look at this like a bad thing. has had no ill effects from it either.He was able to just breeze through his steroid taper his Ibuprofin is gone and just yesterday they reduced his MTX down to 20mg.It was our miricle drug also.We go to Cincinatti Childrens for a 3yr drug safety study.They started the original trials back in the late 90's and have not had anything bad happen to one of their kids,nothing you would not see in the general outpatiant pediatric population.I know your daughter is young but if she could just be on 1 drug instead of 3 thats a good thing. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi Barb, They don't know for sure how or why MTX works other then it supresses the overactive immune system in RA and JRA.Enbrel works differantly.Most people with RA and JRA have an over abundance of Tumor Necrosis Factor alpha in their joints and blood.Enbrel is a TNF inhibitor.It acts like a sponge and soaks up the TNF before it has a chance to get to the joint which is what causes the pain and swelling which leads to joint destruction.TNF is a key component to the healthy part of the immune system that fights off viruses and bacteria so in theory Enbrel could cause more infections or serious infections but to date research shows that it doesn't.Granted there are cases of people developing MS but they had a prior or family history to it.It has caused serious infections in some even resulting in death but again these people had other underlying diseases such as heart disease or diabetis.My son is in a 3 year safety study and I have to report any infections to them weather or not I believe it's related to the Enbrel.So far a few cases of croup but he had that problem since he developed JRA to begin with.He kept busting open his knee being a wild boy and it got infected.The rheumy wrote down cellulitis so I have to report that to them also.Headaches,stomache aches,everything has to be reported.When you read about side effects you are reading every thing that happened with people no matter what the cause or culprit.When it comes to these newer bialogils no one knows for sure what the long term outcome is.Will the person develop cancer on down the road or possibly develop another autoimmune or connective tissue disease.MTX has been around and used for a long time and there have been cases of all kinds of bad things including cancer and death.Liver fibrosis,pulminary fibrosis,lymphomas.If you take in the entire number of people who have used or use these drugs the numbers are very small and very rare.My son is systemic and since I have been on this list,less then 2 years, 4-5 children have died.Atleast 2 mayby 3 due to having systemic and developing MAS and 2 due to MTX side effects.Those numbers may seem high considering the JRA list consists of just over 300 members but we are just a small proportion of the 100,000 children in the US with JRA.Personaly I love Enbrel and what it has done for my son.I don't worry about what it might do to him I enjoy watching him enjoy childhood symptom free. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi Becki, When you said that in the past 2 years, 4-5 children have died, did you mean 4-5 children on this list or in the general population of those with jra? Also, what does MAS stand for? Thanks! - Robin Re: Enbrel help Hi Barb, They don't know for sure how or why MTX works other then it supresses the overactive immune system in RA and JRA.Enbrel works differantly.Most people with RA and JRA have an over abundance of Tumor Necrosis Factor alpha in their joints and blood.Enbrel is a TNF inhibitor.It acts like a sponge and soaks up the TNF before it has a chance to get to the joint which is what causes the pain and swelling which leads to joint destruction.TNF is a key component to the healthy part of the immune system that fights off viruses and bacteria so in theory Enbrel could cause more infections or serious infections but to date research shows that it doesn't.Granted there are cases of people developing MS but they had a prior or family history to it.It has caused serious infections in some even resulting in death but again these people had other underlying diseases such as heart disease or diabetis.My son is in a 3 year safety study and I have to report any infections to them weather or not I believe it's related to the Enbrel.So far a few cases of croup but he had that problem since he developed JRA to begin with.He kept busting open his knee being a wild boy and it got infected.The rheumy wrote down cellulitis so I have to report that to them also.Headaches,stomache aches,everything has to be reported.When you read about side effects you are reading every thing that happened with people no matter what the cause or culprit.When it comes to these newer bialogils no one knows for sure what the long term outcome is.Will the person develop cancer on down the road or possibly develop another autoimmune or connective tissue disease.MTX has been around and used for a long time and there have been cases of all kinds of bad things including cancer and death.Liver fibrosis,pulminary fibrosis,lymphomas.If you take in the entire number of people who have used or use these drugs the numbers are very small and very rare.My son is systemic and since I have been on this list,less then 2 years, 4-5 children have died.Atleast 2 mayby 3 due to having systemic and developing MAS and 2 due to MTX side effects.Those numbers may seem high considering the JRA list consists of just over 300 members but we are just a small proportion of the 100,000 children in the US with JRA.Personaly I love Enbrel and what it has done for my son.I don't worry about what it might do to him I enjoy watching him enjoy childhood symptom free. Hugs Becki and 4systemic To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi Robin, I meant from this list.MAS is something that only happens to systemic kids it stands for Macrophage activation syndrome.Usually the child has severe,unremmiten systemic disease.It is not caused from the drugs,these kids are just hard to control.The other two,one died from liver failure,which should not happen if the labs are done reguarly to test for elevated liver enzymes the other died from Pulminary fibrosis also known as Methotrexate lung.Didn't mean to spook anyone it's just all these drugs have risks even if it's rare and systemic kids do have a higher mortality rate then the other 2 sub groups.Mayby Georgina will chime in on this one and explain things better.Starting this group she has been here from the beginning and may be able to shine more light on what happened.I tend to block these things out so I don't go dwelling on it.Try not to dwell on it either. Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Hi Barb, My son was older than your daughter when he first was diagnosed with systemic JRA. He had just turned 6 (he's already 14 now!) but if Enbrel had been available, which it wasn't at the time, it definitely would have been something we would have tried. Because of our experience, I'm a firm believer in the need to treat JRA early and aggressively. Too much lasting, permanent, damage can take place when treatment is delayed or when you don't find a treatment that helps to control the inflammation. We were willing to try nearly all of the options available, hopeful that once my son's symptoms were no longer as serious and threatening we could begin to taper off the meds. I know you have special concerns, with your daughter being so little. She's already having blood labs drawn regularly, to monitor her response to MTX. They try to be very careful to take good care and make sure our children are safe. I remember how scary it was for me, when we first began the regimen of my son needing to be given medicines on a daily basis. It was all so foreign and new. Drastic measures were needed though, because he was so ill. When we started to see results, it wasn't so bad anymore. It was sad for me, but also a motivating factor, to get letters from adults who had suffered from JRA as children. They didn't used to have so many choices and options available and a lot of times their treatment consisted of hardly more than bedrest and huge amounts of aspirin daily. Later on in life, these kids were relegated to wheelchairs, in and out of hospitals for joint replacement surgeries. The scars on their bodies are a constant reminder of their battles with arthritis. Our kids, the newer and younger generation of arthritis warriors, are facing a new frontier. There's new hopes, the promise of a better long-term prognosis, with the advent of these newest arthritis treatments. It's not easy for us parents, being responsible for making choices that can and do affect our kids' lives, but we hope the outcome will be good and that our kids will do well. We can try to give them a better chance, hope to make their growing up a little easier. I think we've all struggled with the issues you're going through right now. There are no easy answers. So I wish you the very best, as you try to figure out what's best to do. Aloha, Georgina Todd Lange wrote: >Hello all! > >We just got back from our rheumy appointment and got some bad news. e >(2 poly) needs to start Enbrel injections. I am having a terrible time with >all of this and could really use some support from all of you. She is also >on MTX, Celebrex, folic acid, and Prilosec. > >I think she is so young to be on all of these heavy medicines. Has anyone >had experience with and 2 year old and Enbrel? I totally trust my doctor, >and as he said today, we need to be agressive with the treatment to prevent >permanent damage. > >What is Enbrel, and how does it work with MTX? What can I expect? > >Sorry if I sound desperate, but that's how I feel right now. > >Barb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Once again, Georgina, you have said what so many of us feel. Great response! Michele Re: Enbrel help Hi Barb, My son was older than your daughter when he first was diagnosed with systemic JRA. He had just turned 6 (he's already 14 now!) but if Enbrel had been available, which it wasn't at the time, it definitely would have been something we would have tried. Because of our experience, I'm a firm believer in the need to treat JRA early and aggressively. Too much lasting, permanent, damage can take place when treatment is delayed or when you don't find a treatment that helps to control the inflammation. We were willing to try nearly all of the options available, hopeful that once my son's symptoms were no longer as serious and threatening we could begin to taper off the meds. I know you have special concerns, with your daughter being so little. She's already having blood labs drawn regularly, to monitor her response to MTX. They try to be very careful to take good care and make sure our children are safe. I remember how scary it was for me, when we first began the regimen of my son needing to be given medicines on a daily basis. It was all so foreign and new. Drastic measures were needed though, because he was so ill. When we started to see results, it wasn't so bad anymore. It was sad for me, but also a motivating factor, to get letters from adults who had suffered from JRA as children. They didn't used to have so many choices and options available and a lot of times their treatment consisted of hardly more than bedrest and huge amounts of aspirin daily. Later on in life, these kids were relegated to wheelchairs, in and out of hospitals for joint replacement surgeries. The scars on their bodies are a constant reminder of their battles with arthritis. Our kids, the newer and younger generation of arthritis warriors, are facing a new frontier. There's new hopes, the promise of a better long-term prognosis, with the advent of these newest arthritis treatments. It's not easy for us parents, being responsible for making choices that can and do affect our kids' lives, but we hope the outcome will be good and that our kids will do well. We can try to give them a better chance, hope to make their growing up a little easier. I think we've all struggled with the issues you're going through right now. There are no easy answers. So I wish you the very best, as you try to figure out what's best to do. Aloha, Georgina Todd Lange wrote: >Hello all! > >We just got back from our rheumy appointment and got some bad news. >e (2 poly) needs to start Enbrel injections. I am having a >terrible time with all of this and could really use some support from >all of you. She is also on MTX, Celebrex, folic acid, and Prilosec. > >I think she is so young to be on all of these heavy medicines. Has >anyone had experience with and 2 year old and Enbrel? I totally trust >my doctor, and as he said today, we need to be agressive with the >treatment to prevent permanent damage. > >What is Enbrel, and how does it work with MTX? What can I expect? > >Sorry if I sound desperate, but that's how I feel right now. > >Barb > To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 From my understanding, Embrel is actually "better" for our kids than Arava and Methotrexate because it targets specific things rather than internal organs. He had said that she would not have to do the regular blood work now. He has said that they have been testing Embrel on kids for 5 or 6 years now with NO problems. As it turns out my niece (she was diagnosed at age 17) is on Embrel after nothing else has worked. She has been on it for 1 1/2 years now and LOVES it. She said finally she can really get around well without pain. She has said that the injections if given with insulin needles make it rather painless. She said the medicine doesn't hurt, unlike the methotrexate injections. I used the numbing cream and Haley didn't feel the poke, but the methotrexate stung. Jessie said that the only uncomfort is the Embrel is cold going in the skin. I am really hoping that it works as good on Haley as it has with others that I have heard of. I am getting the insurance to approve it now, and hopefully will be able to start Embrel maybe Thursday or Friday. Jessie told me that it is $1241.00 a month. YIKES!! Glad I have insurance!!!! Terrie & Haley (9 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Hi Terrie, My son has just started his 12 month of Enbrel.He is systemic and had a 50/50 chance responding like a poly child.He was currantly on 25mg MTX 200mg Plaquenil,800mg Ibuprofin a day and just has his left ankle drained and injected twice in 2 months let alone he was comming off a 24mg prednisilone taper.Within 9 days all symptoms dissapeared.He was a totally differant child.One month later the Plaquenil was gone and he was down to about 4mg Pred.Within 3 months we tweaked it 2.5mg and everything went away 100%of the time and has been that way until 7 weeks ago.Nothing major is still 100% of the time 23hr and 30minuites.His foot hurts from time to time after he has laid down at night going full force all day and evening.His Ibuprofin and 5mg of the MTX were discarded and reduced respectively.His labs went from funky to perfectly normal and other then an injection site reaction for about 4 months nothing.He gets the croup often but tarted getting that only after getting JRA and MTX.He has had two bouts of an infected boo boo but nothing serious.He has never gotten any kind of infection that has produced a fever or even made him feel bad but had a doozy about a month ago.Still no fever or feeling sick,looked horrible though.You hear alot of bad things as far as serious infections,but nothing more then the general pediatric population and nothing they can truley blame on Enbrel alone.It has been our miricle drug and without it he would still be on steroids and unable to walk or run.We added 1 more drug but got rid of 3.It is worth a try but I wouldn't let them take your daughter of her other DMARDS and just Enbrel alone.Once things get perfect for several months then taper or try and drop either the MTX or Arava.I know MTX and Enbrel have been studied but not sure abot Enbrel and Arava.Sorry to have rambled,just wanted to give our experiance and my knowledge. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Terrie, a 17 yr old probably does the adult dose which is 8 vials a month. being 4 and starting at 62 lbs goes through 4 vials a month.Where we get it it costs $714 a month but we pay $25 thank the lord.We were lucky though,once our insurance company had all the needed medical records,2hours later a case worker called me crying saying he was approved.Good luck with the insurance company.Fight and appeal if you have to. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 I haven't...but Casey (12, poly) is also going on Enbrel soon, her rheumy appt. is this Friday and Dr. Dowd wants to get her on it - wanted to last month but we've still been jumping through insurance hoops <sigh>... I will also be watching for replies to your post, Terri! I was apprehensive about it, then last week I noticed that Casey's left foot/ankle is becoming crooked...which panicked me to the point that I'm willing to do anything now... OTOH I have heard about some wonderful - almost miraculous - results from it, so I am now going into it with a lot of hope. Are you feeling good about it, from what Haley's rheumy has said? (LOVE that name Haley, BTW .) Sherry http://www.ittybittybirdiebites.com ....over 2 dozen sprouting links (click on Sprouting Links) ....this month's special (click on Specials) ....avian nutrition ideas and links (click on Nutrition) => NEW AVIAN AUCTIONS at http://www.scritches.com - WOW! <= => NEW LIST at seedjunkies <= ----- Original Message ----- From: <tsmodsquad@...> > The doc has decided that Arava and Methotrexate in not doing much good....... > we now are going to try Enbrel. Anyone's kids on this, or have tried this. > Please give me some feedback.... Hopefully Haley with lose some of the > swelling and feet pain..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 before i started taking enbrel, i was in a wheelchair. now i still have flares, but the time between them has grown, and i'm not in a constant state of pain! the needles really don'y hurt, and neither does the medicine, but it IS really cold going in, which made me a little sick to my stomache the first time. after that, i was fine. sometimes i get a liitle bump at the injection site, but it soesn't hurt. enbrel has worked better for me than any other med, with almost no side effects, and i've has arthritis for almost 5 years. i hope it works as well for you guys! alyssa(17, poly) >From: tsmodsquad@... >Reply- > >Subject: Re: Enbrel help >Date: Mon, 21 Jul 2003 22:28:00 EDT > >From my understanding, Embrel is actually " better " for our kids than Arava >and Methotrexate because it targets specific things rather than internal >organs. > He had said that she would not have to do the regular blood work now. He >has said that they have been testing Embrel on kids for 5 or 6 years now >with NO >problems. As it turns out my niece (she was diagnosed at age 17) is on >Embrel after nothing else has worked. She has been on it for 1 1/2 years >now and >LOVES it. She said finally she can really get around well without pain. >She >has said that the injections if given with insulin needles make it rather >painless. She said the medicine doesn't hurt, unlike the methotrexate >injections. >I used the numbing cream and Haley didn't feel the poke, but the >methotrexate >stung. Jessie said that the only uncomfort is the Embrel is cold going in >the skin. I am really hoping that it works as good on Haley as it has with >others that I have heard of. > >I am getting the insurance to approve it now, and hopefully will be able to >start Embrel maybe Thursday or Friday. Jessie told me that it is $1241.00 >a >month. YIKES!! Glad I have insurance!!!! > >Terrie & Haley (9 poly) _________________________________________________________________ Add photos to your e-mail with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 In a message dated 7/21/2003 10:45:31 PM Central America Standard Ti, Arthurnator@... writes: Fight and appeal if you have to. I have done the insurance fight before........ with what I pay in premiums...... I will get them to pay!! Insurance companies.... URG! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 Hi Tammy! I am very glad to hear how Embrel has helped your daughter. Haley took her first shot on her 9th birthday, July 24th. I really am hoping it works well. I haven't heard anyone that it didn't help! I understand it takes 2-6 weeks for results. I'll let ya know! Thanks! Terrie & Haley (9 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Donna, I am sort of having this problem. Some of my psoriasis patches have cleared but my feet still look awful. As a matter of fact in the last couple of weeks my feet have seem to be getting worse, not better, and my nails and the skin closest to my nails looks pretty much the same as when I started. I am using Enbrel as a mono-therapy, not combined with any other meds. [ ] enbrel help > i have been on enbrel now for 6 weeks. it is helping PA but thr psoriasis is raging on and on....anyone have this problem thanks Donna in Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Hi Donna, When I first started Enbrel it only improved my skin a little and it flared on my feet. I never had psoriasis on my feet before except my nails. Now I am on about 6 months of enbrel and my skin is totally clear. Around the fourth month it started to make a big difference on my skin. Please don't give up on it. My doctor took me off the MTX because the enbrel has worked so well on my skin. It can take a while so just try to be patient. Some people see results right away and others it takes a lot longer but is worth the wait. Try to have a good day Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Maybe you guys should consider a combination therapy. I started Enbrel on a combonation therapy my only psoriasis seems to be in my scalp but is mild in comparison to what it was. Keep in mind I've been on it for 8 months now. Some people on Enbrel can take up to a year to show full effectiveness so be patient and don't give up yet. Keli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Try getting enbrel from the source. Yours, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 ----- Original Message ----- From: <dbargad@...> > Try getting enbrel from the source. Yours, Deborah Good luck with that. It was supposed to take 2-3 weeks for Medicare to approve or not approve Enbrel for me. I applied to the company at the same time. That was over three months ago and I still don't have it from anyone. Nina Quote Link to comment Share on other sites More sharing options...
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