Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi,I know I dont usually write in this mailing list but I do go through all your emails. I've just read through 68 after ignoring my email for a couple of days. For those who dont know me Im Vicky (14) and was diagnosed with stills last april and have been on methotrexatte since december but I feel I get no where with my dr as he knows nothing as hes just my local my rheumy is in London and I should hopefully be seeing her next week. I just found out that we were suppose to be increasing the MTX injections but we heard nothing about that from my dr. How can you go to an appointment and listen to a dr tell you what to do when you know more about your illness than he does! Anyone else have this problem? Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 - When did Kay-Lynn start having problems? There are lots of people on this list who can tell you about systematic jra. My daughter has pauci. When she was doing poorly, her knee stayed swollen all the time -- about five months straight, so I think that's " normal. " Maybe I'm wrong re: systematic. Other than taking her meds, you can try lots of things to make it feel better. Suggestions I've heard and tried include warm baths, hot (or cold) compresses, warm pajamas at night, swimming/ hot tubs, electric blankets -- as you can see, warmth usually helps. Good luck! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hello everyone. I am pretty new to this group but for that matter i am pretty new to the entire subject. Anyway I have so many questions about this form of jra ( systemic) the doctors are treating my three yr old daughter for this but yet they will not say for sure she has it. They have put her on indocine 3Xs a day. She has recently started to show more swelling. Altough it is not bad in her knees it has been here for 48hrs and it has never lasted this long. Is this normal and is there anything I can do to help it. I just do not feel educated at all of this. I sit around not knowing what to expect or what to look out for. I dont even know if there are any signs that I should be looking for that could be dangerous. I do know she gets fevers and rashes with the fevers but they have seem to slow with her meds. which I guess would be expected. I feel so lost with this. Her Specialist doesnt have the best bed side manners If anyone can help me please write me back.Thanks for listening Daughter Kay-Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 hello Vicky, girl you sound just like me!! i have all kinds of docs like that. most of the time it seems like i have to tell them whats wrong with me because they dont know how to figure it out, they just write a prescription for whatever i say is wrong. its taken me a long time and a whole of fussing to find a very small group of docs that i trust and actually know what they are doing. i wish you the best vicky, my name is brandy and i am 23. i was diagnosed when i was 5 with systemic also. say hi anytime, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 Vicky, Nice to hear from you. I'm in Kent and have a child (6yrs) with systemic JIA. As you're in the UK, your treatments will probably be managed by the specialists in London as a GP is not normally qualified to deal with this problem. They will however be kept informed. The injections may be carried out at your local hospital. What hospital are you attending in London? We attend Gt Ormond St. Oliver Re: systemic jra Hi,I know I dont usually write in this mailing list but I do go through all your emails. I've just read through 68 after ignoring my email for a couple of days. For those who dont know me Im Vicky (14) and was diagnosed with stills last april and have been on methotrexatte since december but I feel I get no where with my dr as he knows nothing as hes just my local my rheumy is in London and I should hopefully be seeing her next week. I just found out that we were suppose to be increasing the MTX injections but we heard nothing about that from my dr. How can you go to an appointment and listen to a dr tell you what to do when you know more about your illness than he does! Anyone else have this problem? Vicky To manage your subscription settings, please visit: For links to websites about JRA: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2001 Report Share Posted March 24, 2001 Hi , Thanks for replying its good to know someone else has thick Dr's. Its alright for me now as I'm going to see our specialist next Wednesday which means more SHOPPING as the Hospitals in London! Bye Write again soon Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Hello , I joined this posting a few months ago and have been slowly trying to get has much information has I can. My son r also 3 yrs-systemic has been having a awful time since being diagnosed at 18months. He too has not grown at all this year and we are at the end of the line for medications. We tried Enbrel and Remicade both being disappointing. For the past couples months we have been going in for IV pulses weekly. One maybe two days of relief but still a lot of pain. He gets so upset at the hospital getting pricked it is almost not worth the results. I can expect a spiked fever along with the notorious rash and major stiffness 5 out of the 7 days of the week. I canceled both his PT and OT last week because he just couldn't move. I can see the stiffness starting but it moves so quickly I can;t control it. I pretty much have to wait for the Tylenol to kick in. It is hard to tell a 3 yr old to try to stretch, I don't seem to get a lot of reasoning with him. r is also on a lot of meds. Enbrel, mthx, prednisone, indomethcin and naproxen. We have never tried cyclosporin. Is Skyler still on Enbrel? Although it is not the magic answer for Ky, we think he would be worse with out it. Our next step is cytoxan. We are very reluctant to try this med but do not have a lot of options. It took me for ever to find this web site and it is so nice to not be alone. Thanks for all your postings. Pamela >From: " V. " <chivalry@...> >Reply- >< > >Subject: Re: newly not yet diagnosed needs help [Long reply] >Date: Thu, 5 Apr 2001 10:36:28 -0700 > >Hello, > >This topic is so close to my heart. >For the parents just discovering the challenge if JRA - please know that >you are not alone. According to statistics there are over 250,000 children >affected with this disease nationally. If your child has Systemic >(otherwise known as Stills Disease) then you are in a minority of 25% of >JRA cases. >I will share our story with you but please keep in mind that we are one of >the most severe cases. Most do not go through what we have been through. >My son Skyler, now 3 yrs old, first began showing unusual illnesses around >the age of 6 months. For 4 months we fought with the Doctors as they told >us we were imagining things. We went from one specialist to another and >were given many many medications for each symptom. As the list of problems >grew we knew there was something deeper - something unseen. The Dr's began >to tell us we were just paranoid. >Skyler stopped growing as he could not keep food down and vomited every >meal. He went from the 98% in size and weight for his age to about 24% as >he totally stopped growing. They listed him as " Failure to Thrive " . He >had more rashes than I can remember as his immune system became more >erratic and he seemed to have a constant flu. >In October of 1998 at 10 months of age I finally became irate and forced my >opinion on the pediatrician. As it happened, the regular Dr. was not >available and we saw another staff Dr. She looked at Skyler and noticed he >tended to rest in a fetal position. She asked a few questions, looked at >his chart and said " I believe you - I think we should hospitalize Skyler >and run some tests " . This was both a relief and very frightening. Even >now it brings this 6'3 " 215 lb man to tears. >We went to Phoenix Childrens Hospital here in Arizona. As if on cue Skyler >began to have very high fevers - then several different rashes. One rash >in particular fascinated the Hospital staff. They took pictures for record >and many other Dr's came by to see it as the story spread. They brought in >so many specialists - there was an infectious disease Dr., a Pulmonary Dr., >Immunologist, Endocrinologist, hemotologist, etc. etc. etc. >Slowly they eliminated what the disease was NOT. What was left was the >only answer - Stills Disease - a rare form of RA (or JRA in kids). But NO >ONE could tell us what to expect. There was no doctor there that had >experience with this first hand! They lead us to a Rheumatologist - >someone who specializes in the diseaze - but even he could not tell us how >this diseaze would progress! We have learned that this is because it is >never exactly the same for anyone. Each person has their own unique >symptoms, though there are many typical problems. And each sufferer >responds to a different group of medications. Some people go into >remnission and some do not. Our hope was in the claim that most do go into >remission. >We began to read up on the net and get educated. Soon we seemed to know >more than most doctors! More times than I can remember I have suggested >the course of treatment that has been effective. >To continue Skylers story, first they prescribed Motrin to control the >inflamation. This worked and the fevers were held in check and he returned >to acting like a normal baby. We stopped the Motrin and he was in >remission! >Then, in late summer of 1999 his fevers returned with a vengance. Each >time that unusual rash appeared just minutes before the fever. Fevers over >106 that would last all night. We would ice pack him and feed him frozed >veggies to get nurishment and cool him down. Motrin no longer worked. Then >new and more serious sicknesses came on us that put Skyler in the hospital >- Pneumonia, Meninghitis and the fevers resulted in 6 hospitalizations in >as many months. Now it has been nearly two years and he has not gone into >remission - though the disease seems to be in control. Yet he is on so >many medications with so many hazardous side affects that we have constant >concerns about how it is affecting him. He has not grown in over a year, >has developed a catarac in his right eye, has irregular kidney test >results, anemia and now is experiencing progressive joint damage in both >knees, both feet, both hands, elbows and shoulders. >We have to give him 3 injections weekly and five oral medications daily. >Blood work monthly, visits to 3 different specialists and a trip to UCLA in >California every two months. Now, he is playing like a little boy should. >He does not run as fast and can not jump well, but his laughter is a joy to >hear and his smile is our sunshine. Somehow I believe that good comes out >of such things, though it has been very hard to see the light. My son has >touched many peoples lives and there has been much support. I know of >others with this disease that when they hear Skylers story they feel that >if he can deal with it so can they. >I have come to appreciate every healthy moment I can steal with my son and >have grown closer to all my children. >I pray that no child should ever have to go through this, but if anyone >does I encourage the parents to find a source of support like this list or >the Arthritis Foundation in their area. It is so easy to feel lost, alone >and hopeless. Here I have found so many answers and prayers, without which >I do not know if I could have made it. >Tonight we will add one more unknown face to our prayers. God Bless and >know you are not alone. > > [ & Skyler] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Pamela, Your r sounds to be about where we were last September when we finally got approved to go out to UCLA. At that time he was on Prednisolone (20mg day), Methotrexate (0.4mg weekly - sub q), Enbrel (0.4 2x week - sub q), Tylenol (1 teaspoon ?mg day), Motrin (3 tsp ?mg day), Lukovorin and Prilosec. Around that time I read a report on Cyclosporin & Methotrexate working well together and when I got to UCLA they tolkd me that they were the ones that pioneered that treatment. They dropped the Motrin & Tylenol, did a Pred push and added the cyclosporin. Since that time he has been much more functional and fairly stable. We had a few points that we thought he was about to relapse, but he pulled out of it. Since that time I read a recent report that Enbrel and MTX seemed to work better together and another that said Enbrel and Cyclosporin did this as well and on our last UCLA trip they decided to keep the Enbrel and even upped the dose (even though there was no apparent help back when he started it - even for 6 months). So, for now, the combo seems to have a handle on things and the magic trio seems to be MTX+ Enbrel+ Cyclosporin. I would strongly recommend this to systemic cases (stills disease) that don't respond to other treatments. If you wish to get more information for your Dr' I suppose they could look into UCLA and contact Dr. Rawlings or Dr. Kerry Gallagher. ~ [ & Skyler] Re: newly not yet diagnosed needs help [Long reply] >Date: Thu, 5 Apr 2001 10:36:28 -0700 > >Hello, > >This topic is so close to my heart. >For the parents just discovering the challenge if JRA - please know that >you are not alone. According to statistics there are over 250,000 children >affected with this disease nationally. If your child has Systemic >(otherwise known as Stills Disease) then you are in a minority of 25% of >JRA cases. >I will share our story with you but please keep in mind that we are one of >the most severe cases. Most do not go through what we have been through. >My son Skyler, now 3 yrs old, first began showing unusual illnesses around >the age of 6 months. For 4 months we fought with the Doctors as they told >us we were imagining things. We went from one specialist to another and >were given many many medications for each symptom. As the list of problems >grew we knew there was something deeper - something unseen. The Dr's began >to tell us we were just paranoid. >Skyler stopped growing as he could not keep food down and vomited every >meal. He went from the 98% in size and weight for his age to about 24% as >he totally stopped growing. They listed him as " Failure to Thrive " . He >had more rashes than I can remember as his immune system became more >erratic and he seemed to have a constant flu. >In October of 1998 at 10 months of age I finally became irate and forced my >opinion on the pediatrician. As it happened, the regular Dr. was not >available and we saw another staff Dr. She looked at Skyler and noticed he >tended to rest in a fetal position. She asked a few questions, looked at >his chart and said " I believe you - I think we should hospitalize Skyler >and run some tests " . This was both a relief and very frightening. Even >now it brings this 6'3 " 215 lb man to tears. >We went to Phoenix Childrens Hospital here in Arizona. As if on cue Skyler >began to have very high fevers - then several different rashes. One rash >in particular fascinated the Hospital staff. They took pictures for record >and many other Dr's came by to see it as the story spread. They brought in >so many specialists - there was an infectious disease Dr., a Pulmonary Dr., >Immunologist, Endocrinologist, hemotologist, etc. etc. etc. >Slowly they eliminated what the disease was NOT. What was left was the >only answer - Stills Disease - a rare form of RA (or JRA in kids). But NO >ONE could tell us what to expect. There was no doctor there that had >experience with this first hand! They lead us to a Rheumatologist - >someone who specializes in the diseaze - but even he could not tell us how >this diseaze would progress! We have learned that this is because it is >never exactly the same for anyone. Each person has their own unique >symptoms, though there are many typical problems. And each sufferer >responds to a different group of medications. Some people go into >remnission and some do not. Our hope was in the claim that most do go into >remission. >We began to read up on the net and get educated. Soon we seemed to know >more than most doctors! More times than I can remember I have suggested >the course of treatment that has been effective. >To continue Skylers story, first they prescribed Motrin to control the >inflamation. This worked and the fevers were held in check and he returned >to acting like a normal baby. We stopped the Motrin and he was in >remission! >Then, in late summer of 1999 his fevers returned with a vengance. Each >time that unusual rash appeared just minutes before the fever. Fevers over >106 that would last all night. We would ice pack him and feed him frozed >veggies to get nurishment and cool him down. Motrin no longer worked. Then >new and more serious sicknesses came on us that put Skyler in the hospital >- Pneumonia, Meninghitis and the fevers resulted in 6 hospitalizations in >as many months. Now it has been nearly two years and he has not gone into >remission - though the disease seems to be in control. Yet he is on so >many medications with so many hazardous side affects that we have constant >concerns about how it is affecting him. He has not grown in over a year, >has developed a catarac in his right eye, has irregular kidney test >results, anemia and now is experiencing progressive joint damage in both >knees, both feet, both hands, elbows and shoulders. >We have to give him 3 injections weekly and five oral medications daily. >Blood work monthly, visits to 3 different specialists and a trip to UCLA in >California every two months. Now, he is playing like a little boy should. >He does not run as fast and can not jump well, but his laughter is a joy to >hear and his smile is our sunshine. Somehow I believe that good comes out >of such things, though it has been very hard to see the light. My son has >touched many peoples lives and there has been much support. I know of >others with this disease that when they hear Skylers story they feel that >if he can deal with it so can they. >I have come to appreciate every healthy moment I can steal with my son and >have grown closer to all my children. >I pray that no child should ever have to go through this, but if anyone >does I encourage the parents to find a source of support like this list or >the Arthritis Foundation in their area. It is so easy to feel lost, alone >and hopeless. Here I have found so many answers and prayers, without which >I do not know if I could have made it. >Tonight we will add one more unknown face to our prayers. God Bless and >know you are not alone. > > [ & Skyler] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 , Thank you so much for responding. We go to UCSF and I called today and asked about cyclosporin. Our nurse was not sure about the combo of it and said they had tried it on several kids with no response. I will surly call back tomorrow with the info you gave. r is on exactly the same doses of mthx and enbrel. We really would like to hold off on the cytoxan and this will hopefully give us hope. What was Skylers dose of Enbrel increased too? r weighs 27 lbs, although today at the hospital he was about 28 1/2. How a pound and a half made us so glad. He ranges between the two. How does Skyler deal with the shots and IV's? r seemed to do a lot better last year but I think he is just fed up with it all. We stopped using the embla because he knew the shot was coming and he just thought about it for an hour. Now we just give it and its over. The hospital visits are different. He screams and pleads before we even pull in the parking lot. We have gone to a couple of the JRA conferences and the whole aspect of shots and procedures just do not apply for such a young guy. The whole idea of giving him options are great and I truly understand he needs to feel control but he is 3 and you must know. Thanks again and I am glad your son is finally feeling like a little boy should, Pamela >From: " V. " <chivalry@...> >Reply- >< > >Subject: Re: Re: systemic JRA >Date: Tue, 17 Apr 2001 19:08:02 -0700 > >Pamela, >Your r sounds to be about where we were last September when we finally >got approved to go out to UCLA. >At that time he was on Prednisolone (20mg day), Methotrexate (0.4mg weekly >- sub q), Enbrel (0.4 2x week - sub q), Tylenol (1 teaspoon ?mg day), >Motrin (3 tsp ?mg day), Lukovorin and Prilosec. >Around that time I read a report on Cyclosporin & Methotrexate working well >together and when I got to UCLA they tolkd me that they were the ones that >pioneered that treatment. They dropped the Motrin & Tylenol, did a Pred >push and added the cyclosporin. Since that time he has been much more >functional and fairly stable. We had a few points that we thought he was >about to relapse, but he pulled out of it. >Since that time I read a recent report that Enbrel and MTX seemed to work >better together and another that said Enbrel and Cyclosporin did this as >well and on our last UCLA trip they decided to keep the Enbrel and even >upped the dose (even though there was no apparent help back when he started >it - even for 6 months). >So, for now, the combo seems to have a handle on things and the magic trio >seems to be MTX+ Enbrel+ Cyclosporin. I would strongly recommend this to >systemic cases (stills disease) that don't respond to other treatments. If >you wish to get more information for your Dr' I suppose they could look >into UCLA and contact Dr. Rawlings or Dr. Kerry Gallagher. > >~ [ & Skyler] > Re: newly not yet diagnosed needs help [Long reply] > >Date: Thu, 5 Apr 2001 10:36:28 -0700 > > > >Hello, > > > >This topic is so close to my heart. > >For the parents just discovering the challenge if JRA - please know >that > >you are not alone. According to statistics there are over 250,000 >children > >affected with this disease nationally. If your child has Systemic > >(otherwise known as Stills Disease) then you are in a minority of 25% >of > >JRA cases. > >I will share our story with you but please keep in mind that we are one >of > >the most severe cases. Most do not go through what we have been >through. > >My son Skyler, now 3 yrs old, first began showing unusual illnesses >around > >the age of 6 months. For 4 months we fought with the Doctors as they >told > >us we were imagining things. We went from one specialist to another >and > >were given many many medications for each symptom. As the list of >problems > >grew we knew there was something deeper - something unseen. The Dr's >began > >to tell us we were just paranoid. > >Skyler stopped growing as he could not keep food down and vomited every > >meal. He went from the 98% in size and weight for his age to about 24% >as > >he totally stopped growing. They listed him as " Failure to Thrive " . >He > >had more rashes than I can remember as his immune system became more > >erratic and he seemed to have a constant flu. > >In October of 1998 at 10 months of age I finally became irate and >forced my > >opinion on the pediatrician. As it happened, the regular Dr. was not > >available and we saw another staff Dr. She looked at Skyler and >noticed he > >tended to rest in a fetal position. She asked a few questions, looked >at > >his chart and said " I believe you - I think we should hospitalize >Skyler > >and run some tests " . This was both a relief and very frightening. >Even > >now it brings this 6'3 " 215 lb man to tears. > >We went to Phoenix Childrens Hospital here in Arizona. As if on cue >Skyler > >began to have very high fevers - then several different rashes. One >rash > >in particular fascinated the Hospital staff. They took pictures for >record > >and many other Dr's came by to see it as the story spread. They brought >in > >so many specialists - there was an infectious disease Dr., a Pulmonary >Dr., > >Immunologist, Endocrinologist, hemotologist, etc. etc. etc. > >Slowly they eliminated what the disease was NOT. What was left was the > >only answer - Stills Disease - a rare form of RA (or JRA in kids). But >NO > >ONE could tell us what to expect. There was no doctor there that had > >experience with this first hand! They lead us to a Rheumatologist - > >someone who specializes in the diseaze - but even he could not tell us >how > >this diseaze would progress! We have learned that this is because it >is > >never exactly the same for anyone. Each person has their own unique > >symptoms, though there are many typical problems. And each sufferer > >responds to a different group of medications. Some people go into > >remnission and some do not. Our hope was in the claim that most do go >into > >remission. > >We began to read up on the net and get educated. Soon we seemed to >know > >more than most doctors! More times than I can remember I have >suggested > >the course of treatment that has been effective. > >To continue Skylers story, first they prescribed Motrin to control the > >inflamation. This worked and the fevers were held in check and he >returned > >to acting like a normal baby. We stopped the Motrin and he was in > >remission! > >Then, in late summer of 1999 his fevers returned with a vengance. Each > >time that unusual rash appeared just minutes before the fever. Fevers >over > >106 that would last all night. We would ice pack him and feed him >frozed > >veggies to get nurishment and cool him down. Motrin no longer worked. >Then > >new and more serious sicknesses came on us that put Skyler in the >hospital > >- Pneumonia, Meninghitis and the fevers resulted in 6 hospitalizations >in > >as many months. Now it has been nearly two years and he has not gone >into > >remission - though the disease seems to be in control. Yet he is on so > >many medications with so many hazardous side affects that we have >constant > >concerns about how it is affecting him. He has not grown in over a >year, > >has developed a catarac in his right eye, has irregular kidney test > >results, anemia and now is experiencing progressive joint damage in >both > >knees, both feet, both hands, elbows and shoulders. > >We have to give him 3 injections weekly and five oral medications >daily. > >Blood work monthly, visits to 3 different specialists and a trip to >UCLA in > >California every two months. Now, he is playing like a little boy >should. > >He does not run as fast and can not jump well, but his laughter is a >joy to > >hear and his smile is our sunshine. Somehow I believe that good comes >out > >of such things, though it has been very hard to see the light. My son >has > >touched many peoples lives and there has been much support. I know of > >others with this disease that when they hear Skylers story they feel >that > >if he can deal with it so can they. > >I have come to appreciate every healthy moment I can steal with my son >and > >have grown closer to all my children. > >I pray that no child should ever have to go through this, but if anyone > >does I encourage the parents to find a source of support like this list >or > >the Arthritis Foundation in their area. It is so easy to feel lost, >alone > >and hopeless. Here I have found so many answers and prayers, without >which > >I do not know if I could have made it. > >Tonight we will add one more unknown face to our prayers. God Bless >and > >know you are not alone. > > > > [ & Skyler] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Pamela, Until this last trip to UCLA Skyler was on the same doses of MTX & Enbrel - now he is on 0.8 cc Enbrel (2x week sub q) & 0.4cc MTX (1x week sub q ) and 0.2 cc Cyclosporin daily. You might ask Georgina if she can assist you in locating the reports on Cyclosporin in conjunction with MTX, another report on Enbrel with MTX. These should be in the database still. The latter one came out very recently while the former I think came out last fall sometime. I originally have been skeptical on the Enbrel as I had read reports about it (alone) not working so well on Systemic cases of RA due to the particular Cytokines that appear to be affected. But the combo seems to be the secret. We can not say if the increase in Enbrel has done any good at this point, but will let you know. Like r, Skyler (talk about your de ja vu's?) can see a shot or blood test coming a mile off. He has had more iv's than we care to remember and has gotten to the point that he knows every little thing they use in the process. Once he had a fit when he saw a big rubber band like the tournequit they use. The heartbreaking part is after they take blood he sais to them through his little tears " Thank you " . As for the shots & Emla Cream ~ I have tried the Emla two times and as he knows it means he is getting a shot he just screams the entire time, instead uf just during the shot. So, I have just gotten pretty good at hiding the whole process as long as possible, then while I lay him out to change a diaper I have the shot stuff nearby. I let him know JUST before I wipe the alchahol swab on his leg, then " zap " him quickly. The only tough part is getting him to relax his leg so it wont hurt more.. I have gotten pretty good at getting done quickly. I believe if you ask all the parents here they will tell you pretty much the same - that there is no real way to get past the whole needle thing and yes it is upsetting to all, especially the little guys. Hope this helps some. Re: newly not yet diagnosed needs help [Long reply] > >Date: Thu, 5 Apr 2001 10:36:28 -0700 > > > >Hello, > > > >This topic is so close to my heart. > >For the parents just discovering the challenge if JRA - please know >that > >you are not alone. According to statistics there are over 250,000 >children > >affected with this disease nationally. If your child has Systemic > >(otherwise known as Stills Disease) then you are in a minority of 25% >of > >JRA cases. > >I will share our story with you but please keep in mind that we are one >of > >the most severe cases. Most do not go through what we have been >through. > >My son Skyler, now 3 yrs old, first began showing unusual illnesses >around > >the age of 6 months. For 4 months we fought with the Doctors as they >told > >us we were imagining things. We went from one specialist to another >and > >were given many many medications for each symptom. As the list of >problems > >grew we knew there was something deeper - something unseen. The Dr's >began > >to tell us we were just paranoid. > >Skyler stopped growing as he could not keep food down and vomited every > >meal. He went from the 98% in size and weight for his age to about 24% >as > >he totally stopped growing. They listed him as " Failure to Thrive " . >He > >had more rashes than I can remember as his immune system became more > >erratic and he seemed to have a constant flu. > >In October of 1998 at 10 months of age I finally became irate and >forced my > >opinion on the pediatrician. As it happened, the regular Dr. was not > >available and we saw another staff Dr. She looked at Skyler and >noticed he > >tended to rest in a fetal position. She asked a few questions, looked >at > >his chart and said " I believe you - I think we should hospitalize >Skyler > >and run some tests " . This was both a relief and very frightening. >Even > >now it brings this 6'3 " 215 lb man to tears. > >We went to Phoenix Childrens Hospital here in Arizona. As if on cue >Skyler > >began to have very high fevers - then several different rashes. One >rash > >in particular fascinated the Hospital staff. They took pictures for >record > >and many other Dr's came by to see it as the story spread. They brought >in > >so many specialists - there was an infectious disease Dr., a Pulmonary >Dr., > >Immunologist, Endocrinologist, hemotologist, etc. etc. etc. > >Slowly they eliminated what the disease was NOT. What was left was the > >only answer - Stills Disease - a rare form of RA (or JRA in kids). But >NO > >ONE could tell us what to expect. There was no doctor there that had > >experience with this first hand! They lead us to a Rheumatologist - > >someone who specializes in the diseaze - but even he could not tell us >how > >this diseaze would progress! We have learned that this is because it >is > >never exactly the same for anyone. Each person has their own unique > >symptoms, though there are many typical problems. And each sufferer > >responds to a different group of medications. Some people go into > >remnission and some do not. Our hope was in the claim that most do go >into > >remission. > >We began to read up on the net and get educated. Soon we seemed to >know > >more than most doctors! More times than I can remember I have >suggested > >the course of treatment that has been effective. > >To continue Skylers story, first they prescribed Motrin to control the > >inflamation. This worked and the fevers were held in check and he >returned > >to acting like a normal baby. We stopped the Motrin and he was in > >remission! > >Then, in late summer of 1999 his fevers returned with a vengance. Each > >time that unusual rash appeared just minutes before the fever. Fevers >over > >106 that would last all night. We would ice pack him and feed him >frozed > >veggies to get nurishment and cool him down. Motrin no longer worked. >Then > >new and more serious sicknesses came on us that put Skyler in the >hospital > >- Pneumonia, Meninghitis and the fevers resulted in 6 hospitalizations >in > >as many months. Now it has been nearly two years and he has not gone >into > >remission - though the disease seems to be in control. Yet he is on so > >many medications with so many hazardous side affects that we have >constant > >concerns about how it is affecting him. He has not grown in over a >year, > >has developed a catarac in his right eye, has irregular kidney test > >results, anemia and now is experiencing progressive joint damage in >both > >knees, both feet, both hands, elbows and shoulders. > >We have to give him 3 injections weekly and five oral medications >daily. > >Blood work monthly, visits to 3 different specialists and a trip to >UCLA in > >California every two months. Now, he is playing like a little boy >should. > >He does not run as fast and can not jump well, but his laughter is a >joy to > >hear and his smile is our sunshine. Somehow I believe that good comes >out > >of such things, though it has been very hard to see the light. My son >has > >touched many peoples lives and there has been much support. I know of > >others with this disease that when they hear Skylers story they feel >that > >if he can deal with it so can they. > >I have come to appreciate every healthy moment I can steal with my son >and > >have grown closer to all my children. > >I pray that no child should ever have to go through this, but if anyone > >does I encourage the parents to find a source of support like this list >or > >the Arthritis Foundation in their area. It is so easy to feel lost, >alone > >and hopeless. Here I have found so many answers and prayers, without >which > >I do not know if I could have made it. > >Tonight we will add one more unknown face to our prayers. God Bless >and > >know you are not alone. > > > > [ & Skyler] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 , Sorry for asking so many questions but our sons seem to have a lot in common. How much does Skyler weigh? How long did it take to see results for the cyclosporin? We really want to try this and need to wait for our doctors to get back to us. Hopefully I will get an answer later today. Again thanks, PAmela >From: " V. " <chivalry@...> >Reply- >< > >Subject: Re: Re: systemic JRA >Date: Wed, 18 Apr 2001 09:16:26 -0700 > >Pamela, >Until this last trip to UCLA Skyler was on the same doses of MTX & Enbrel - >now he is on 0.8 cc Enbrel (2x week sub q) & 0.4cc MTX (1x week sub q ) and >0.2 cc Cyclosporin daily. You might ask Georgina if she can assist you in >locating the reports on Cyclosporin in conjunction with MTX, another report >on Enbrel with MTX. These should be in the database still. The latter one >came out very recently while the former I think came out last fall >sometime. >I originally have been skeptical on the Enbrel as I had read reports about >it (alone) not working so well on Systemic cases of RA due to the >particular Cytokines that appear to be affected. But the combo seems to be >the secret. We can not say if the increase in Enbrel has done any good at >this point, but will let you know. > >Like r, Skyler (talk about your de ja vu's?) can see a shot or blood >test coming a mile off. He has had more iv's than we care to remember and >has gotten to the point that he knows every little thing they use in the >process. Once he had a fit when he saw a big rubber band like the >tournequit they use. The heartbreaking part is after they take blood he >sais to them through his little tears " Thank you " . > >As for the shots & Emla Cream ~ I have tried the Emla two times and as he >knows it means he is getting a shot he just screams the entire time, >instead uf just during the shot. So, I have just gotten pretty good at >hiding the whole process as long as possible, then while I lay him out to >change a diaper I have the shot stuff nearby. I let him know JUST before I >wipe the alchahol swab on his leg, then " zap " him quickly. The only tough >part is getting him to relax his leg so it wont hurt more.. I have gotten >pretty good at getting done quickly. >I believe if you ask all the parents here they will tell you pretty much >the same - that there is no real way to get past the whole needle thing and >yes it is upsetting to all, especially the little guys. > >Hope this helps some. > > Re: newly not yet diagnosed needs help [Long reply] > > >Date: Thu, 5 Apr 2001 10:36:28 -0700 > > > > > >Hello, > > > > > >This topic is so close to my heart. > > >For the parents just discovering the challenge if JRA - please know > >that > > >you are not alone. According to statistics there are over 250,000 > >children > > >affected with this disease nationally. If your child has Systemic > > >(otherwise known as Stills Disease) then you are in a minority of >25% > >of > > >JRA cases. > > >I will share our story with you but please keep in mind that we are >one > >of > > >the most severe cases. Most do not go through what we have been > >through. > > >My son Skyler, now 3 yrs old, first began showing unusual illnesses > >around > > >the age of 6 months. For 4 months we fought with the Doctors as >they > >told > > >us we were imagining things. We went from one specialist to >another > >and > > >were given many many medications for each symptom. As the list of > >problems > > >grew we knew there was something deeper - something unseen. The >Dr's > >began > > >to tell us we were just paranoid. > > >Skyler stopped growing as he could not keep food down and vomited >every > > >meal. He went from the 98% in size and weight for his age to about >24% > >as > > >he totally stopped growing. They listed him as " Failure to >Thrive " . > >He > > >had more rashes than I can remember as his immune system became >more > > >erratic and he seemed to have a constant flu. > > >In October of 1998 at 10 months of age I finally became irate and > >forced my > > >opinion on the pediatrician. As it happened, the regular Dr. was >not > > >available and we saw another staff Dr. She looked at Skyler and > >noticed he > > >tended to rest in a fetal position. She asked a few questions, >looked > >at > > >his chart and said " I believe you - I think we should hospitalize > >Skyler > > >and run some tests " . This was both a relief and very frightening. > >Even > > >now it brings this 6'3 " 215 lb man to tears. > > >We went to Phoenix Childrens Hospital here in Arizona. As if on >cue > >Skyler > > >began to have very high fevers - then several different rashes. >One > >rash > > >in particular fascinated the Hospital staff. They took pictures >for > >record > > >and many other Dr's came by to see it as the story spread. They >brought > >in > > >so many specialists - there was an infectious disease Dr., a >Pulmonary > >Dr., > > >Immunologist, Endocrinologist, hemotologist, etc. etc. etc. > > >Slowly they eliminated what the disease was NOT. What was left was >the > > >only answer - Stills Disease - a rare form of RA (or JRA in kids). >But > >NO > > >ONE could tell us what to expect. There was no doctor there that >had > > >experience with this first hand! They lead us to a Rheumatologist >- > > >someone who specializes in the diseaze - but even he could not tell >us > >how > > >this diseaze would progress! We have learned that this is because >it > >is > > >never exactly the same for anyone. Each person has their own >unique > > >symptoms, though there are many typical problems. And each >sufferer > > >responds to a different group of medications. Some people go into > > >remnission and some do not. Our hope was in the claim that most do >go > >into > > >remission. > > >We began to read up on the net and get educated. Soon we seemed to > >know > > >more than most doctors! More times than I can remember I have > >suggested > > >the course of treatment that has been effective. > > >To continue Skylers story, first they prescribed Motrin to control >the > > >inflamation. This worked and the fevers were held in check and he > >returned > > >to acting like a normal baby. We stopped the Motrin and he was in > > >remission! > > >Then, in late summer of 1999 his fevers returned with a vengance. >Each > > >time that unusual rash appeared just minutes before the fever. >Fevers > >over > > >106 that would last all night. We would ice pack him and feed him > >frozed > > >veggies to get nurishment and cool him down. Motrin no longer >worked. > >Then > > >new and more serious sicknesses came on us that put Skyler in the > >hospital > > >- Pneumonia, Meninghitis and the fevers resulted in 6 >hospitalizations > >in > > >as many months. Now it has been nearly two years and he has not >gone > >into > > >remission - though the disease seems to be in control. Yet he is >on so > > >many medications with so many hazardous side affects that we have > >constant > > >concerns about how it is affecting him. He has not grown in over a > >year, > > >has developed a catarac in his right eye, has irregular kidney test > > >results, anemia and now is experiencing progressive joint damage in > >both > > >knees, both feet, both hands, elbows and shoulders. > > >We have to give him 3 injections weekly and five oral medications > >daily. > > >Blood work monthly, visits to 3 different specialists and a trip to > >UCLA in > > >California every two months. Now, he is playing like a little boy > >should. > > >He does not run as fast and can not jump well, but his laughter is >a > >joy to > > >hear and his smile is our sunshine. Somehow I believe that good >comes > >out > > >of such things, though it has been very hard to see the light. My >son > >has > > >touched many peoples lives and there has been much support. I know >of > > >others with this disease that when they hear Skylers story they >feel > >that > > >if he can deal with it so can they. > > >I have come to appreciate every healthy moment I can steal with my >son > >and > > >have grown closer to all my children. > > >I pray that no child should ever have to go through this, but if >anyone > > >does I encourage the parents to find a source of support like this >list > >or > > >the Arthritis Foundation in their area. It is so easy to feel >lost, > >alone > > >and hopeless. Here I have found so many answers and prayers, >without > >which > > >I do not know if I could have made it. > > >Tonight we will add one more unknown face to our prayers. God >Bless > >and > > >know you are not alone. > > > > > > [ & Skyler] > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Vicky, I was informed around six months back that Enbrel was still under trial in a number of UK hospitals. Due to the rather high cost of treatment, I understand that the Medical staff have to make a special case for funding. Regards, Oliver Re: Re: systemic JRA Vicky, Enbrel is a new one and I wasn't convinced it was helping or even helpful until last month. Originally it came out here only a few years ago and it has had alot of publicity. Many (non systemic) RA patients have had ALOT of sucess with it alone. But the reports I have seen say it is helpfull (for systemic) in conjunction with these others. I need to make a general note here - PLEASE keep in mind that though a treatment works for one person (or even two) it does not mean it will work for all ~ and though it could be helpful, we have to remember that should not try to prescribe treatment for others. I have heard that the treatment Skyler is on is still rather new. Sorry, just needed to make a disclaimer there. It could be helpful to look into these other meds mentioned, but know that somewhere there is likely something that is helpful, atleast for a time. We affectionately call this the " Drug Cocktail " . ~ ----- Original Message ----- , Yes I'm systemic jra but I'm only on Cyclosporin and Methotrexate. I havn't tried or even heard of enbrel and naprosyn. I think it isn't used as much over here in the UK Vicky Quote Link to comment Share on other sites More sharing options...
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