Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Hi Vicky, MTX is normally started out about that dose and gradually increased. It can take several weeks before you see a noticable difference, and during that time, you will probably increase the dose per your drs instructions. As for joint pain, Abbie seems to have 1 centralized "bad joint", and that is her right knee. It is always stiff and painful, and gives out when she walks. However, she also has floating pain in both ankles, her other knee, wrist and finger joints, and here lately, back and neck. She has had 3 Remicade infusions now, and we are really noticing a difference. She went to 5 mg of prednisone yesterday, and smiled all day. What I am noticing is that she is experiencing pain since she started dropping the pred, but much less than she would have before Remicade. (She was completely pain free in the period between starting Remicade, and the first pred reduction.) She is dropping 5 mg every 2 weeks per drs orders. How scary! So. . .May 28 has a big red star on the calendar! lol Hope this means a good summer is on the way. Christy (Abbie 12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Christy, I am so happy Abbie is doing good with the Remicade.Your rheumy must have alot of faith in it to drop her pred so fast.I talked to s rheumy about it and was told he would like to see more trials done on systemic people.He says the trial they did on adult stills helped the systemic part but not the joints.Georgina posted the results of that trial and I dont remember it saying not much joint improvement.Those peoples labs looked great compaired to before Remicade.We havent given up on Enbrel,still waiting,told it will be atleast Dec if not longer,so was put on Plaquinel,not real crazy having to wait 3-6 months to see if anything will happen,especially since he is going backwards.New joint involvement.His knees have gone beyond squishy,they are definatelly swollen,never really believed that his knees had active arthritis in them,looks like all the swelling in his lft ankle has gone to his right knee.We go to the rheumy wed,see what they have to say.Sorry to get off track,I dream of the day can get to low doses of pred,heck off the pred isnt even a goal right now,just being able to get below 8mg without systemic flaires.GO ABBIE GO! Beck and 3systemic gazelle34@... wrote: Hi Vicky, MTX is normally started out about that dose and gradually increased. It can take several weeks before you see a noticable difference, and during that time, you will probably increase the dose per your drs instructions. As for joint pain, Abbie seems to have 1 centralized "bad joint", and that is her right knee. It is always stiff and painful, and gives out when she walks. However, she also has floating pain in both ankles, her other knee, wrist and finger joints, and here lately, back and neck. She has had 3 Remicade infusions now, and we are really noticing a difference. She went to 5 mg of prednisone yesterday, and smiled all day. What I am noticing is that she is experiencing pain since she started dropping the pred, but much less than she would have before Remicade. (She was completely pain free in the period between starting Remicade, and the first pred reduction.) She is dropping 5 mg every 2 weeks per drs orders. How scary! So. . .May 28 has a big red star on the calendar! lol Hope this means a good summer is on the way. Christy (Abbie 12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Hi Becki, I was just wondering if you had asked your pharmasist how many people were ahead of you? Where I live the pharmasist said that whoever puts their order in first gets it first but its like a waiting list and he said that all the drug stores are getting the enbrel in every 3 weeks but only one person gets it every 3 weeks at each drug store and they go by who brought their prescription in first. Just trying to be helpful. Jona mom of na 2 poly Allan Larson <alarson1@...> wrote: Christy,I am so happy Abbie is doing good with the Remicade.Your rheumy musthave alot of faith in it to drop her pred so fast.I talked to srheumy about it and was told he would like to see more trials done onsystemic people.He says the trial they did on adult stills helped thesystemic part but not the joints.Georgina posted the results of thattrial and I dont remember it saying not much joint improvement.Thosepeoples labs looked great compaired to before Remicade.We havent givenup on Enbrel,still waiting,told it will be atleast Dec if not longer,so was put on Plaquinel,not real crazy having to wait 3-6 months tosee if anything will happen,especially since he is going backwards.Newjoint involvement.His knees have gone beyond squishy,they aredefinatelly swollen,never really believed that his knees had activearthritis in them,looks like all the swelling in his lft ankle has goneto his right knee.We go to the rheumy wed,see what they have tosay.Sorry to get off track,I dream of the day can get to low dosesof pred,heck off the pred isnt even a goal right now,just being able toget below 8mg without systemic flaires.GO ABBIE GO!Beck and 3systemicgazelle34@... wrote:> Hi Vicky,>> MTX is normally started out about that dose and gradually increased.> It can take several weeks before you see a noticable difference, and> during that time, you will probably increase the dose per your drs> instructions.>> As for joint pain, Abbie seems to have 1 centralized "bad joint", and> that is her right knee. It is always stiff and painful, and gives out> when she walks. However, she also has floating pain in both ankles,> her other knee, wrist and finger joints, and here lately, back and> neck.>> She has had 3 Remicade infusions now, and we are really noticing a> difference. She went to 5 mg of prednisone yesterday, and smiled all> day. What I am noticing is that she is experiencing pain since she> started dropping the pred, but much less than she would have before> Remicade. (She was completely pain free in the period between starting> Remicade, and the first pred reduction.) She is dropping 5 mg every 2> weeks per drs orders. How scary! So. . .May 28 has a big red star on> the calendar! lol>> Hope this means a good summer is on the way.>> Christy (Abbie 12, systemic)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2002 Report Share Posted May 17, 2002 Becki, I was very concerned about the quick drop of pred, but the dr said that if the Remicade is doing its job, then it is taking over the task of the pred, and she can drop the pred this fast. I must say, that so far it is working. I picked Abbie up after school on Tuesday (first day of 5mg) and the smile on her face was so wide it could light up a moonless night! Tonight she mowed half the lawn, ran the weed eater, and then pitched for an hour with her dad. She is paying for it now, somewhat, but Tylenol and a hot shower seem to be the answer. Just unbelievable. I hope that can get some relief soon. Christy (Abbie 12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Way to go Abbie!!!!!!! That is terrific..seems I need some of your energy..then my son wouldn't have to mow the grass..lol! Christy I also think that Remicade is a great medicine..It has done wonders for Tabitha. Well hope all continues to go great! karen(tab17..poly) From: gazelle34@... Reply- Subject: Re: Systemic Onset JRA Date: Fri, 17 May 2002 23:42:29 EDT Becki, I was very concerned about the quick drop of pred, but the dr said that if the Remicade is doing its job, then it is taking over the task of the pred, and she can drop the pred this fast. I must say, that so far it is working. I picked Abbie up after school on Tuesday (first day of 5mg) and the smile on her face was so wide it could light up a moonless night! Tonight she mowed half the lawn, ran the weed eater, and then pitched for an hour with her dad. She is paying for it now, somewhat, but Tylenol and a hot shower seem to be the answer. Just unbelievable. I hope that can get some relief soon. Christy (Abbie 12, systemic) Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Jona, Its Becki,you misunderstood. is not on Enbrel,hes been on the waiting list since Dec 21,now knowing that it will be atleast Nov,Dec at the earliest. jona wrote: Hi Becki, I was just wondering if you had asked your pharmasist how many people were ahead of you? Where I live the pharmasist said that whoever puts their order in first gets it first but its like a waiting list and he said that all the drug stores are getting the enbrel in every 3 weeks but only one person gets it every 3 weeks at each drug store and they go by who brought their prescription in first. Just trying to be helpful. Jona mom of na 2 poly Allan Larson <alarson1@...> wrote: Christy, I am so happy Abbie is doing good with the Remicade.Your rheumy must have alot of faith in it to drop her pred so fast.I talked to s rheumy about it and was told he would like to see more trials done on systemic people.He says the trial they did on adult stills helped the systemic part but not the joints.Georgina posted the results of that trial and I dont remember it saying not much joint improvement.Those peoples labs looked great compaired to before Remicade.We havent given up on Enbrel,still waiting,told it will be atleast Dec if not longer,so was put on Plaquinel,not real crazy having to wait 3-6 months to see if anything will happen,especially since he is going backwards.New joint involvement.His knees have gone beyond squishy,they are definatelly swollen,never really believed that his knees had active arthritis in them,looks like all the swelling in his lft ankle has gone to his right knee.We go to the rheumy wed,see what they have to say.Sorry to get off track,I dream of the day can get to low doses of pred,heck off the pred isnt even a goal right now,just being able to get below 8mg without systemic flaires.GO ABBIE GO! Beck and 3systemic gazelle34@... wrote: > Hi Vicky, > > MTX is normally started out about that dose and gradually increased. > It can take several weeks before you see a noticable difference, and > during that time, you will probably increase the dose per your drs > instructions. > > As for joint pain, Abbie seems to have 1 centralized "bad joint", and > that is her right knee. It is always stiff and painful, and gives out > when she walks. However, she also has floating pain in both ankles, > her other knee, wrist and finger joints, and here lately, back and > neck. > > She has had 3 Remicade infusions now, and we are really noticing a > difference. She went to 5 mg of prednisone yesterday, and smiled all > day. What I am noticing is that she is experiencing pain since she > started dropping the pred, but much less than she would have before > Remicade. (She was completely pain free in the period between starting > Remicade, and the first pred reduction.) She is dropping 5 mg every 2 > weeks per drs orders. How scary! So. . .May 28 has a big red star on > the calendar! lol > > Hope this means a good summer is on the way. > > Christy (Abbie 12, systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 --I'm sorry Becki I didn't know that you had never got the enbrel yet. Sorry. Jona mom of na 2 poly - In @y..., Allan Larson <alarson1@b...> wrote: > Jona, > Its Becki,you misunderstood. is not on Enbrel,hes been on the > waiting list since Dec 21,now knowing that it will be atleast Nov,Dec at > the earliest. > > jona wrote: > > > > > > > Hi Becki, > > > > I was just wondering if you had asked your pharmasist how many people > > were ahead of you? Where I live the pharmasist said that whoever puts > > their order in first gets it first but its like a waiting list and he > > said that all the drug stores are getting the enbrel in every 3 weeks > > but only one person gets it every 3 weeks at each drug store and they > > go by who brought their prescription in first. Just trying to be > > helpful. Jona mom of na 2 poly > > > > Allan Larson <alarson1@b...> wrote: > > > > Christy, > > I am so happy Abbie is doing good with the Remicade.Your > > rheumy must > > have alot of faith in it to drop her pred so fast.I talked > > to s > > rheumy about it and was told he would like to see more > > trials done on > > systemic people.He says the trial they did on adult stills > > helped the > > systemic part but not the joints.Georgina posted the results > > of that > > trial and I dont remember it saying not much joint > > improvement.Those > > peoples labs looked great compaired to before Remicade.We > > havent given > > up on Enbrel,still waiting,told it will be atleast Dec if > > not longer,so > > was put on Plaquinel,not real crazy having to wait 3-6 > > months to > > see if anything will happen,especially since he is going > > backwards.New > > joint involvement.His knees have gone beyond squishy,they > > are > > definatelly swollen,never really believed that his knees had > > active > > arthritis in them,looks like all the swelling in his lft > > ankle has gone > > to his right knee.We go to the rheumy wed,see what they have > > to > > say.Sorry to get off track,I dream of the day can get > > to low doses > > of pred,heck off the pred isnt even a goal right now,just > > being able to > > get below 8mg without systemic flaires.GO ABBIE GO! > > Beck and 3systemic > > > > gazelle34@a... wrote: > > > > > Hi Vicky, > > > > > > MTX is normally started out about that dose and gradually > > increased. > > > It can take several weeks before you see a noticable > > difference, and > > > during that time, you will probably increase the dose per > > your drs > > > instructions. > > > > > > As for joint pain, Abbie seems to have 1 centralized " bad > > joint " , and > > > that is her right knee. It is always stiff and painful, > > and gives out > > > when she walks. However, she also has floating pain in > > both ankles, > > > her other knee, wrist and finger joints, and here lately, > > back and > > > neck. > > > > > > She has had 3 Remicade infusions now, and we are really > > noticing a > > > difference. She went to 5 mg of prednisone yesterday, and > > smiled all > > > day. What I am noticing is that she is experiencing pain > > since she > > > started dropping the pred, but much less than she would > > have before > > > Remicade. (She was completely pain free in the period > > between starting > > > Remicade, and the first pred reduction.) She is dropping 5 > > mg every 2 > > > weeks per drs orders. How scary! So. . .May 28 has a big > > red star on > > > the calendar! lol > > > > > > Hope this means a good summer is on the way. > > > > > > Christy (Abbie 12, systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Jona, Dont be sorry,I have ranted and raved and so has s rheumy,but its beyond our control.All we could do is add another drug and hope it gets him off the steroids untill the Enbrel comes.I have a question for you,and PLEASE dont take it the wrong way.How and the world did you get na Enbrel at 18 months old?I have a friend whos daughter was diagnosed at 15 months,They put her application in when they found out it was fixing to get approval for 2 and up,this was 3 months before her second b-day.Right after her b-day she got it.I dont think they had a trial for kids 2-4,I think they just sent a survey out on weather or not any rheumys had kids on it at this age,and what doses and side affects.Its all so confusing,I wish they were still doing trials, would definatelly qualify.Oh well we are waiting for the Plaquenil to kick in,hes been on it for 3 weeks and so far I dont know,hes still comming down on a steroid taper from his last flair.Hes on 10mg and I will know when he gets to 9mg,that is always when the trouble starts.Hope you have a good one. Becki and 3systemic lovelyjayc wrote: > --I'm sorry Becki I didn't know that you had never got the enbrel > yet. Sorry. Jona mom of na 2 poly > > - In @y..., Allan Larson <alarson1@b...> wrote: > > Jona, > > Its Becki,you misunderstood. is not on Enbrel,hes been on the > > waiting list since Dec 21,now knowing that it will be atleast > Nov,Dec at > > the earliest. > > > > jona wrote: > > > > > > > > > > > Hi Becki, > > > > > > I was just wondering if you had asked your pharmasist how many > people > > > were ahead of you? Where I live the pharmasist said that whoever > puts > > > their order in first gets it first but its like a waiting list > and he > > > said that all the drug stores are getting the enbrel in every 3 > weeks > > > but only one person gets it every 3 weeks at each drug store and > they > > > go by who brought their prescription in first. Just trying > to be > > > helpful. Jona mom of na 2 poly > > > > > > Allan Larson <alarson1@b...> wrote: > > > > > > Christy, > > > I am so happy Abbie is doing good with the Remicade.Your > > > rheumy must > > > have alot of faith in it to drop her pred so fast.I talked > > > to s > > > rheumy about it and was told he would like to see more > > > trials done on > > > systemic people.He says the trial they did on adult stills > > > helped the > > > systemic part but not the joints.Georgina posted the results > > > of that > > > trial and I dont remember it saying not much joint > > > improvement.Those > > > peoples labs looked great compaired to before Remicade.We > > > havent given > > > up on Enbrel,still waiting,told it will be atleast Dec if > > > not longer,so > > > was put on Plaquinel,not real crazy having to wait 3-6 > > > months to > > > see if anything will happen,especially since he is going > > > backwards.New > > > joint involvement.His knees have gone beyond squishy,they > > > are > > > definatelly swollen,never really believed that his knees had > > > active > > > arthritis in them,looks like all the swelling in his lft > > > ankle has gone > > > to his right knee.We go to the rheumy wed,see what they have > > > to > > > say.Sorry to get off track,I dream of the day can get > > > to low doses > > > of pred,heck off the pred isnt even a goal right now,just > > > being able to > > > get below 8mg without systemic flaires.GO ABBIE GO! > > > Beck and 3systemic > > > > > > gazelle34@a... wrote: > > > > > > > Hi Vicky, > > > > > > > > MTX is normally started out about that dose and gradually > > > increased. > > > > It can take several weeks before you see a noticable > > > difference, and > > > > during that time, you will probably increase the dose per > > > your drs > > > > instructions. > > > > > > > > As for joint pain, Abbie seems to have 1 centralized " bad > > > joint " , and > > > > that is her right knee. It is always stiff and painful, > > > and gives out > > > > when she walks. However, she also has floating pain in > > > both ankles, > > > > her other knee, wrist and finger joints, and here lately, > > > back and > > > > neck. > > > > > > > > She has had 3 Remicade infusions now, and we are really > > > noticing a > > > > difference. She went to 5 mg of prednisone yesterday, and > > > smiled all > > > > day. What I am noticing is that she is experiencing pain > > > since she > > > > started dropping the pred, but much less than she would > > > have before > > > > Remicade. (She was completely pain free in the period > > > between starting > > > > Remicade, and the first pred reduction.) She is dropping 5 > > > mg every 2 > > > > weeks per drs orders. How scary! So. . .May 28 has a big > > > red star on > > > > the calendar! lol > > > > > > > > Hope this means a good summer is on the way. > > > > > > > > Christy (Abbie 12, systemic) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Just go to , click on checkout help and click on unsubscribe from a group. Good luck to you. By the way, there is no w in holistic. Take care. Eli and Riley 4 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hello! I would like to be taken off the list serv and I'm not certain how to get off...Initially I was interested to know how other parents are handling the JRA but have noticed everyone on this list is doing allopathic medicines and not wholistic. I know wholistic works because my son was in remission for over 5 years after dropping the allopathic protocol and going naturapathic. He just recently was exposed to a virus, (I suspect Epstein-Barr) which has triggered a flare up for the last two months. I would like to dialogue with others who do not believe in steroids, methotrexate and other types of drugs that can do more harm than good. I can appreciate all the heroic methods all the moms and dads are doing to save their children from pain and a potentially dismal future. I am hoping the wholistic protocol we are following will get my son back on the soccer field and bike riding for the summer. He misses it so! It initially took a very long time to " undo " all the damage done by the doctors at the JRA clinic. I wish all of you the very best of love and light to help guide and heal you and your loved ones..... & 13yrs (systemic onset at age 3) -- On Mon, 20 May 2002 09:39:00 Allan Larson wrote: >Jona, >Dont be sorry,I have ranted and raved and so has s rheumy,but its beyond >our control.All we could do is add another drug and hope it gets him off the >steroids untill the Enbrel comes.I have a question for you,and PLEASE dont >take it the wrong way.How and the world did you get na Enbrel at 18 >months old?I have a friend whos daughter was diagnosed at 15 months,They put >her application in when they found out it was fixing to get approval for 2 >and up,this was 3 months before her second b-day.Right after her b-day she >got it.I dont think they had a trial for kids 2-4,I think they just sent a >survey out on weather or not any rheumys had kids on it at this age,and what >doses and side affects.Its all so confusing,I wish they were still doing >trials, would definatelly qualify.Oh well we are waiting for the >Plaquenil to kick in,hes been on it for 3 weeks and so far I dont know,hes >still comming down on a steroid taper from his last flair.Hes on 10mg and I >will know when he gets to 9mg,that is always when the trouble starts.Hope you >have a good one. >Becki and 3systemic > >lovelyjayc wrote: > >> --I'm sorry Becki I didn't know that you had never got the enbrel >> yet. Sorry. Jona mom of na 2 poly >> >> - In @y..., Allan Larson <alarson1@b...> wrote: >> > Jona, >> > Its Becki,you misunderstood. is not on Enbrel,hes been on the >> > waiting list since Dec 21,now knowing that it will be atleast >> Nov,Dec at >> > the earliest. >> > >> > jona wrote: >> > >> > > >> > > >> > > Hi Becki, >> > > >> > > I was just wondering if you had asked your pharmasist how many >> people >> > > were ahead of you? Where I live the pharmasist said that whoever >> puts >> > > their order in first gets it first but its like a waiting list >> and he >> > > said that all the drug stores are getting the enbrel in every 3 >> weeks >> > > but only one person gets it every 3 weeks at each drug store and >> they >> > > go by who brought their prescription in first. Just trying >> to be >> > > helpful. Jona mom of na 2 poly >> > > >> > > Allan Larson <alarson1@b...> wrote: >> > > >> > > Christy, >> > > I am so happy Abbie is doing good with the Remicade.Your >> > > rheumy must >> > > have alot of faith in it to drop her pred so fast.I talked >> > > to s >> > > rheumy about it and was told he would like to see more >> > > trials done on >> > > systemic people.He says the trial they did on adult stills >> > > helped the >> > > systemic part but not the joints.Georgina posted the results >> > > of that >> > > trial and I dont remember it saying not much joint >> > > improvement.Those >> > > peoples labs looked great compaired to before Remicade.We >> > > havent given >> > > up on Enbrel,still waiting,told it will be atleast Dec if >> > > not longer,so >> > > was put on Plaquinel,not real crazy having to wait 3-6 >> > > months to >> > > see if anything will happen,especially since he is going >> > > backwards.New >> > > joint involvement.His knees have gone beyond squishy,they >> > > are >> > > definatelly swollen,never really believed that his knees had >> > > active >> > > arthritis in them,looks like all the swelling in his lft >> > > ankle has gone >> > > to his right knee.We go to the rheumy wed,see what they have >> > > to >> > > say.Sorry to get off track,I dream of the day can get >> > > to low doses >> > > of pred,heck off the pred isnt even a goal right now,just >> > > being able to >> > > get below 8mg without systemic flaires.GO ABBIE GO! >> > > Beck and 3systemic >> > > >> > > gazelle34@a... wrote: >> > > >> > > > Hi Vicky, >> > > > >> > > > MTX is normally started out about that dose and gradually >> > > increased. >> > > > It can take several weeks before you see a noticable >> > > difference, and >> > > > during that time, you will probably increase the dose per >> > > your drs >> > > > instructions. >> > > > >> > > > As for joint pain, Abbie seems to have 1 centralized " bad >> > > joint " , and >> > > > that is her right knee. It is always stiff and painful, >> > > and gives out >> > > > when she walks. However, she also has floating pain in >> > > both ankles, >> > > > her other knee, wrist and finger joints, and here lately, >> > > back and >> > > > neck. >> > > > >> > > > She has had 3 Remicade infusions now, and we are really >> > > noticing a >> > > > difference. She went to 5 mg of prednisone yesterday, and >> > > smiled all >> > > > day. What I am noticing is that she is experiencing pain >> > > since she >> > > > started dropping the pred, but much less than she would >> > > have before >> > > > Remicade. (She was completely pain free in the period >> > > between starting >> > > > Remicade, and the first pred reduction.) She is dropping 5 >> > > mg every 2 >> > > > weeks per drs orders. How scary! So. . .May 28 has a big >> > > red star on >> > > > the calendar! lol >> > > > >> > > > Hope this means a good summer is on the way. >> > > > >> > > > Christy (Abbie 12, systemic) >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 BECKI, I don't know all I know is we took her to her regular ped. in her 9th month of age and he finally noticed something was wrong besides spoiledness and coic and he made us an appt. in Lexington Ky. at the UK medical center for pediatrics and we couldn't get in there until a month later then they went ahead and gave na an antibiotic and naproxen and made ua an appt. with Dr.Mier at shriners hospitol for children for 2 days later because she was in terrible shape;she couldn't bend her legs out straight and had a lot of swelling in almost every joint and her wrist looked terrible and she couldn't hold her hands up or look up.Anyway, Dr.Mier is a pediatric rheumatoligist and the drs. at uk spoke very highly of him and said that he would know exactly what was wrong because he dealt with children like that all the time and thats all he deals with. OK we went and seen Mier and he immediatly said that she had poly jra and he done some lab work and x-rays. He kept her on the naproxen and put her on methotrexate tabs and then switched to the injections ,and she was on all them from her 10th month to 18 months and the metho wasn't good for her at all she had a lot of bad reations , her liver, swollen bumps on her legs and arms and sores in her mouth,she stayed with a cold and sick all the time, and it just wasn't helping her improve even with the folic acid. He also started the prednisone at about 12 months old. She had signed up for the enbrel at 18 months old but didn't get it until 19 months old. And she has been on it ever since and luckily she hasn't had to do without it yet. But I don't know. Thats all I know you can contact him or go to the shriners web site or something; I think it is shriners.org or something. They have a 1-800 # it is 1-800-668-4634 His name is Mier. And his nurse is Rhonda Weiler. They just act so good down there and when he sees that something isn't working he will try something else and I am glad he tryed enbrel but I don't know if it's helping her joints. I know it is helping her cause she started peddling her trycycle and she can run a little and I think the main problem is her fingers. I don't know It just seems like shriners must have a lot of power in certain situations and when he isn't in and there is an emergency they call some dr. in ohio and I don't remember his name but his nurse said that he was really good. Well I hope the best for you and and I hope you can get his enbrel sooner than that. I would try and do something about it, I don't know what but I would try and think of something. I hope the for and I'll be praying for him. Jona, mom of na 2 poly Allan Larson <alarson1@...> wrote: Jona,Dont be sorry,I have ranted and raved and so has s rheumy,but its beyondour control.All we could do is add another drug and hope it gets him off thesteroids untill the Enbrel comes.I have a question for you,and PLEASE donttake it the wrong way.How and the world did you get na Enbrel at 18months old?I have a friend whos daughter was diagnosed at 15 months,They puther application in when they found out it was fixing to get approval for 2and up,this was 3 months before her second b-day.Right after her b-day shegot it.I dont think they had a trial for kids 2-4,I think they just sent asurvey out on weather or not any rheumys had kids on it at this age,and whatdoses and side affects.Its all so confusing,I wish they were still doingtrials, would definatelly qualify.Oh well we are waiting for thePlaquenil to kick in,hes been on it for 3 weeks and so far I dont know,hesstill comming down on a steroid taper from his last flair.Hes on 10mg and Iwill know when he gets to 9mg,that is always when the trouble starts.Hope youhave a good one.Becki and 3systemiclovelyjayc wrote:> --I'm sorry Becki I didn't know that you had never got the enbrel> yet. Sorry. Jona mom of na 2 poly>> - In @y..., Allan Larson <alarson1@b...> wrote:> > Jona,> > Its Becki,you misunderstood. is not on Enbrel,hes been on the> > waiting list since Dec 21,now knowing that it will be atleast> Nov,Dec at> > the earliest.> >> > jona wrote:> >> > >> > >> > > Hi Becki,> > >> > > I was just wondering if you had asked your pharmasist how many> people> > > were ahead of you? Where I live the pharmasist said that whoever> puts> > > their order in first gets it first but its like a waiting list> and he> > > said that all the drug stores are getting the enbrel in every 3> weeks> > > but only one person gets it every 3 weeks at each drug store and> they> > > go by who brought their prescription in first. Just trying> to be> > > helpful. Jona mom of na 2 poly> > >> > > Allan Larson <alarson1@b...> wrote:> > >> > > Christy,> > > I am so happy Abbie is doing good with the Remicade.Your> > > rheumy must> > > have alot of faith in it to drop her pred so fast.I talked> > > to s> > > rheumy about it and was told he would like to see more> > > trials done on> > > systemic people.He says the trial they did on adult stills> > > helped the> > > systemic part but not the joints.Georgina posted the results> > > of that> > > trial and I dont remember it saying not much joint> > > improvement.Those> > > peoples labs looked great compaired to before Remicade.We> > > havent given> > > up on Enbrel,still waiting,told it will be atleast Dec if> > > not longer,so> > > was put on Plaquinel,not real crazy having to wait 3-6> > > months to> > > see if anything will happen,especially since he is going> > > backwards.New> > > joint involvement.His knees have gone beyond squishy,they> > > are> > > definatelly swollen,never really believed that his knees had> > > active> > > arthritis in them,looks like all the swelling in his lft> > > ankle has gone> > > to his right knee.We go to the rheumy wed,see what they have> > > to> > > say.Sorry to get off track,I dream of the day can get> > > to low doses> > > of pred,heck off the pred isnt even a goal right now,just> > > being able to> > > get below 8mg without systemic flaires.GO ABBIE GO!> > > Beck and 3systemic> > >> > > gazelle34@a... wrote:> > >> > > > Hi Vicky,> > > >> > > > MTX is normally started out about that dose and gradually> > > increased.> > > > It can take several weeks before you see a noticable> > > difference, and> > > > during that time, you will probably increase the dose per> > > your drs> > > > instructions.> > > >> > > > As for joint pain, Abbie seems to have 1 centralized "bad> > > joint", and> > > > that is her right knee. It is always stiff and painful,> > > and gives out> > > > when she walks. However, she also has floating pain in> > > both ankles,> > > > her other knee, wrist and finger joints, and here lately,> > > back and> > > > neck.> > > >> > > > She has had 3 Remicade infusions now, and we are really> > > noticing a> > > > difference. She went to 5 mg of prednisone yesterday, and> > > smiled all> > > > day. What I am noticing is that she is experiencing pain> > > since she> > > > started dropping the pred, but much less than she would> > > have before> > > > Remicade. (She was completely pain free in the period> > > between starting> > > > Remicade, and the first pred reduction.) She is dropping 5> > > mg every 2> > > > weeks per drs orders. How scary! So. . .May 28 has a big> > > red star on> > > > the calendar! lol> > > >> > > > Hope this means a good summer is on the way.> > > >> > > > Christy (Abbie 12, systemic)> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi Christy, I'm happy that Abbie is feeling so much better. I loved reading your description of her smile. I can picture that : ) Aloha, Georgina ----- Original Message ----- From: gazelle34@... Becki,I was very concerned about the quick drop of pred, but the dr said that if the Remicade is doing its job, then it is taking over the task of the pred, and she can drop the pred this fast. I must say, that so far it is working. I picked Abbie up after school on Tuesday (first day of 5mg) and the smile on her face was so wide it could light up a moonless night! Tonight she mowed half the lawn, ran the weed eater, and then pitched for an hour with her dad. She is paying for it now, somewhat, but Tylenol and a hot shower seem to be the answer. Just unbelievable. I hope that can get some relief soon.Christy (Abbie 12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Theresa, I just wanted you to know that you and are in our thoughts and that hopefully, by now, she is starting to recover and is feeling better. When it rains, it sometimes pours! I hope the storm clouds clear soon and that the sun shines brightly on your family. Especially your little girl. With Love and Aloha, Georgina ----- Original Message ----- From: Theresa Kuhn She has been tested for Hepatitis and that came out positive. But, the Pediatrician said that hepatitis is a general word for liver problems. It couldve been brought on by the mono. So, now my daughter is fighting mono, hep, strep and the JRA. God help her. She didnt seem to be too bad this morning, I am keeping fingers and toes crossed. Thank you for your support and yes, my husband says the same thing about taking it one day at a time and not worry about what is going to happen. I am the nutso one, he is the level headed one... Thanks again! Theresa West Palm Beach, FL ( -5 Systemic)>From: "theresa sappenfield" > >Theresa , Breath deep and clear your head, Mono is often hard on the liver but yes Metho and Vioxx can be too, especially since the mono is present. So going off the Metho and Vioxx would seem like the first step to me. I know that scares you because then what is the JRA going to do, don't cross bridges before you get to them ! Easy to say , hard to do. The liver at least is an organ that has a huge capacity to heal itself. I know and have gone through giving up all meds myself and all is fine with the liver again now. Has she been tested for Hepatitis? It can come along with the mono and be the problem. Bless you both and I'll keep u both in my prayers !!:)Tree:) > >From: Theresa Kuhn >Okay, I am now panicking. Here is the latest on ... She has mono, which has affected her liver (they think) and strep. My god, she is so sick and I am so panicky. I feel like if I am not with her every second, something bad is going to happen. I am at work now, but I wish I were there with her. Any how, her rheumy is concerned that it could be the mtx and the vioxx that have caused the problems with her liver and he has taken her off all meds indefinitely! Help me stay calm, cuz I am about to burst!!! >Theresa -West Palm Beach, FL (-Systemic 5) > > >From: Allan Larson > >Theresa,dont panic.Take a deap breath and know things will be ok,your > >rheumy wont let anything bad happen,I am sure if things go bad,rheumy > >will say yep needs her Viox and give you a script.As for the > >cost,I know I dont like it, and my creditors dont like it, but the meds > >come first,and the doctor visits.It just has to be that way.Even with > >insurance it does add up. takes OTC childrens Motrin 8 bottles at > >$6.00 a bottle a month, doesnt take folate pills but a multi > >vitamin that has 400micrograms folic acid $7.99 a bottle we use 2 a > >month,he is supposed to take a tums a day for calcium,very cheap but he > >doesnt like them,so now I have to try Viactive chews ,not cheap,but > >cheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12 > >for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,I > >dont think the MTX goes towards my drug deductable($100,was $250)because > >its an injectable that is not insullin,and his Plaquenil is $19.When the > >Enbrel comes in I have already figured it will cost roughly $135 for > >4vials.His pred comes in a bottle for $38 but it can last from 1 month > >to 3 months depending on if he has recently flaired or on a taper.On top > >of it all my insurance went up 65% so that is tough.Just hang in > >there,you will find a way to do what you have to.Will send good vibes > >your way.LOLL Becki and 3systemic > > > >Theresa Kuhn wrote: > > > Thank you, but now that I have read some of these emails, I am very > > > concerned, not only for her well being, but for the medication > > > expense. is in a study, so the medicine was provided for us. > > > What happens when she off the meds and may/maynot have to go on > > > medication. We are now dealing with the expense of it all. I know > > > that most of you or your children take metho and folic acid, but > > > is taking Vioxx not Enbrel. I guess I should just wait and > > > cross that bridge when I get there Huh? > > > > > > Theresa -WPB, FL (systemic @3)>From: Allan Larson > > > >Theresa,I hope all goes well,are they going to replace it with > > > something > > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > > the > > > >steroids, after doing good for a few months she started giving the > > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > > >after getting her labs back that she hadnt been taking it > > > reguarly.Mom > > > >got in a whole lot of trouble and was told not only does it help the > > > >joints it also keeps the organs under control. Becki and > > > >3systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 In a message dated 5/21/2002 12:12:12 PM US Mountain Standard Time, bubash797@... writes: she is so used to getting blood drawn these past couple of weeks, that she thinks its fun! Hah! i want to die, she wants to laugh. -- Isn't that funny. asked me after her last labs, "Can I do it again?" (She wanted another lollipop)! Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 not such good news, i am afraid. her rheumy took her off all her meds (MTX and vioxx) for three weeks now. she has not complained at all about her joints, so I am keeping my fingers crossed,but there is still a horrible problem w/ her liver functions levels and they dont know why. that is where we are now, we have no idea what we are going to do next. her pedi said that if her liver levels dont change or elevate in any way,they are going to send her to liver specialist. she is only 5! anyway, her sed rate is at 66 the last time they checked it. they retested her again this morning. pricked and pricked, she is so used to getting blood drawn these past couple of weeks, that she thinks its fun! Hah! i want to die, she wants to laugh. anyway, we are no closer to any answers, hepatitis is out though and she doesnt have strep. she may still have the mono, but they are not relating her liver problems to the mono anymore. i hope someone finds an answer soon. thanks for letting me vent. Theresa West Palm Beach, FL (, Systemic Onset JRA, 5) >From: "Georgina" >Reply- > >Subject: Re: Systemic Onset JRA >Date: Mon, 20 May 2002 12:38:34 -1000 > >Theresa, > >I just wanted you to know that you and are in our thoughts and that hopefully, by now, she is starting to recover and is feeling better. When it rains, it sometimes pours! I hope the storm clouds clear soon and that the sun shines brightly on your family. Especially your little girl. > >With Love and Aloha, >Georgina > ----- Original Message ----- > From: Theresa Kuhn > She has been tested for Hepatitis and that came out positive. But, the Pediatrician said that hepatitis is a general word for liver problems. It couldve been brought on by the mono. So, now my daughter is fighting mono, hep, strep and the JRA. God help her. She didnt seem to be too bad this morning, I am keeping fingers and toes crossed. Thank you for your support and yes, my husband says the same thing about taking it one day at a time and not worry about what is going to happen. I am the nutso one, he is the level headed one... > Thanks again! > > Theresa West Palm Beach, FL ( -5 Systemic) > > >From: "theresa sappenfield" > > > >Theresa , Breath deep and clear your head, Mono is often hard on the liver but yes Metho and Vioxx can be too, especially since the mono is present. So going off the Metho and Vioxx would seem like the first step to me. I know that scares you because then what is the JRA going to do, don't cross bridges before you get to them ! Easy to say , hard to do. The liver at least is an organ that has a huge capacity to heal itself. I know and have gone through giving up all meds myself and all is fine with the liver again now. Has she been tested for Hepatitis? It can come along with the mono and be the problem. Bless you both and I'll keep u both in my prayers !!:)Tree:) > > > >From: Theresa Kuhn > >Okay, I am now panicking. Here is the latest on ... She has mono, which has affected her liver (they think) and strep. My god, she is so sick and I am so panicky. I feel like if I am not with her every second, something bad is going to happen. I am at work now, but I wish I were there with her. Any how, her rheumy is concerned that it could be the mtx and the vioxx that have caused the problems with her liver and he has taken her off all meds indefinitely! Help me stay calm, cuz I am about to burst!!! > >Theresa -West Palm Beach, FL (-Systemic 5) > > > > >From: Allan Larson > > >Theresa,dont panic.Take a deap breath and know things will be ok,your > > >rheumy wont let anything bad happen,I am sure if things go bad,rheumy > > >will say yep needs her Viox and give you a script.As for the > > >cost,I know I dont like it, and my creditors dont like it, but the meds > > >come first,and the doctor visits.It just has to be that way.Even with > > >insurance it does add up. takes OTC childrens Motrin 8 bottles at > > >$6.00 a bottle a month, doesnt take folate pills but a multi > > >vitamin that has 400micrograms folic acid $7.99 a bottle we use 2 a > > >month,he is supposed to take a tums a day for calcium,very cheap but he > > >doesnt like them,so now I have to try Viactive chews ,not cheap,but > > >cheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12 > > >for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,I > > >dont think the MTX goes towards my drug deductable($100,was $250)because > > >its an injectable that is not insullin,and his Plaquenil is $19.When the > > >Enbrel comes in I have already figured it will cost roughly $135 for > > >4vials.His pred comes in a bottle for $38 but it can last from 1 month > > >to 3 months depending on if he has recently flaired or on a taper.On top > > >of it all my insurance went up 65% so that is tough.Just hang in > > >there,you will find a way to do what you have to.Will send good vibes > > >your way.LOLL Becki and 3systemic > > > > > >Theresa Kuhn wrote: > > > > Thank you, but now that I have read some of these emails, I am very > > > > concerned, not only for her well being, but for the medication > > > > expense. is in a study, so the medicine was provided for us. > > > > What happens when she off the meds and may/maynot have to go on > > > > medication. We are now dealing with the expense of it all. I know > > > > that most of you or your children take metho and folic acid, but > > > > is taking Vioxx not Enbrel. I guess I should just wait and > > > > cross that bridge when I get there Huh? > > > > > > > > Theresa -WPB, FL (systemic @3)>From: Allan Larson > > > > >Theresa,I hope all goes well,are they going to replace it with > > > > something > > > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > > > the > > > > >steroids, after doing good for a few months she started giving the > > > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > > > >after getting her labs back that she hadnt been taking it > > > > reguarly.Mom > > > > >got in a whole lot of trouble and was told not only does it help the > > > > >joints it also keeps the organs under control. Becki and > > > > >3systemic Join the world’s largest e-mail service with MSN Hotmail. 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Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Hi Theresa, I just wanted to say that I hope they find something out soon and I will be praying for you Jona mom of na 2 poly Theresa Kuhn <bubash797@...> wrote: not such good news, i am afraid. her rheumy took her off all her meds (MTX and vioxx) for three weeks now. she has not complained at all about her joints, so I am keeping my fingers crossed,but there is still a horrible problem w/ her liver functions levels and they dont know why. that is where we are now, we have no idea what we are going to do next. her pedi said that if her liver levels dont change or elevate in any way,they are going to send her to liver specialist. she is only 5! anyway, her sed rate is at 66 the last time they checked it. they retested her again this morning. pricked and pricked, she is so used to getting blood drawn these past couple of weeks, that she thinks its fun! Hah! i want to die, she wants to laugh. anyway, we are no closer to any answers, hepatitis is out though and she doesnt have strep. she may still have the mono, but they are not relating her liver problems to the mono anymore. i hope someone finds an answer soon. thanks for letting me vent. Theresa West Palm Beach, FL (, Systemic Onset JRA, 5) >From: "Georgina" >Reply- > >Subject: Re: Systemic Onset JRA >Date: Mon, 20 May 2002 12:38:34 -1000 > >Theresa, > >I just wanted you to know that you and are in our thoughts and that hopefully, by now, she is starting to recover and is feeling better. When it rains, it sometimes pours! I hope the storm clouds clear soon and that the sun shines brightly on your family. Especially your little girl. > >With Love and Aloha, >Georgina > ----- Original Message ----- > From: Theresa Kuhn > She has been tested for Hepatitis and that came out positive. But, the Pediatrician said that hepatitis is a general word for liver problems. It couldve been brought on by the mono. So, now my daughter is fighting mono, hep, strep and the JRA. God help her. She didnt seem to be too bad this morning, I am keeping fingers and toes crossed. Thank you for your support and yes, my husband says the same thing about taking it one day at a time and not worry about what is going to happen. I am the nutso one, he is the level headed one... > Thanks again! > > Theresa West Palm Beach, FL ( -5 Systemic) > > >From: "theresa sappenfield" > > > >Theresa , Breath deep and clear your head, Mono is often hard on the liver but yes Metho and Vioxx can be too, especially since the mono is present. So going off the Metho and Vioxx would seem like the first step to me. I know that scares you because then what is the JRA going to do, don't cross bridges before you get to them ! Easy to say , hard to do. The liver at least is an organ that has a huge capacity to heal itself. I know and have gone through giving up all meds myself and all is fine with the liver again now. Has she been tested for Hepatitis? It can come along with the mono and be the problem. Bless you both and I'll keep u both in my prayers !!:)Tree:) > > > >From: Theresa Kuhn > >Okay, I am now panicking. Here is the latest on ... She has mono, which has affected her liver (they think) and strep. My god, she is so sick and I am so panicky. I feel like if I am not with her every second, something bad is going to happen. I am at work now, but I wish I were there with her. Any how, her rheumy is concerned that it could be the mtx and the vioxx that have caused the problems with her liver and he has taken her off all meds indefinitely! Help me stay calm, cuz I am about to burst!!! > >Theresa -West Palm Beach, FL (-Systemic 5) > > > > >From: Allan Larson > > >Theresa,dont panic.Take a deap breath and know things will be ok,your > > >rheumy wont let anything bad happen,I am sure if things go bad,rheumy > > >will say yep needs her Viox and give you a script.As for the > > >cost,I know I dont like it, and my creditors dont like it, but the meds > > >come first,and the doctor visits.It just has to be that way.Even with > > >insurance it does add up. takes OTC childrens Motrin 8 bottles at > > >$6.00 a bottle a month, doesnt take folate pills but a multi > > >vitamin that has 400micrograms folic acid $7.99 a bottle we use 2 a > > >month,he is supposed to take a tums a day for calcium,very cheap but he > > >doesnt like them,so now I have to try Viactive chews ,not cheap,but > > >cheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12 > > >for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,I > > >dont think the MTX goes towards my drug deductable($100,was $250)because > > >its an injectable that is not insullin,and his Plaquenil is $19.When the > > >Enbrel comes in I have already figured it will cost roughly $135 for > > >4vials.His pred comes in a bottle for $38 but it can last from 1 month > > >to 3 months depending on if he has recently flaired or on a taper.On top > > >of it all my insurance went up 65% so that is tough.Just hang in > > >there,you will find a way to do what you have to.Will send good vibes > > >your way.LOLL Becki and 3systemic > > > > > >Theresa Kuhn wrote: > > > > Thank you, but now that I have read some of these emails, I am very > > > > concerned, not only for her well being, but for the medication > > > > expense. is in a study, so the medicine was provided for us. > > > > What happens when she off the meds and may/maynot have to go on > > > > medication. We are now dealing with the expense of it all. I know > > > > that most of you or your children take metho and folic acid, but > > > > is taking Vioxx not Enbrel. I guess I should just wait and > > > > cross that bridge when I get there Huh? > > > > > > > > Theresa -WPB, FL (systemic @3)>From: Allan Larson > > > > >Theresa,I hope all goes well,are they going to replace it with > > > > something > > > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > > > the > > > > >steroids, after doing good for a few months she started giving the > > > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > > > >after getting her labs back that she hadnt been taking it > > > > reguarly.Mom > > > > >got in a whole lot of trouble and was told not only does it help the > > > > >joints it also keeps the organs under control. Becki and > > > > >3systemic Join the world’s largest e-mail service with MSN Hotmail. 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Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Hi Theresa, I fully understand your fears. My son Chase, 9 w/systemic is also on Methatrexate and last months blood work said that his liver function levels are up. We have to have blood work done again tomorrow to see where they're at now. I'm worried at what this means because they also suggested stopping all meds. It's comforting to know that 's not having any pain and I hope this clears up quickly and she can start her meds again. My prayers are with you guys. Good luck, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Theresa, We are always thinking of you and the two of you are in our prayers. Isn't it funny how well these kids deal with some of the medical stuff. Even though I draw blood for a living I hate when it happens to Tas. She has never cried and doesn't mind at all. I am the one that cringes and would like to faint. God bless, Love Casaria and Tasie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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