Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi , Haven't heard from you in a long time.I hope Ezra is atleast stable right now. SoJRA is a variable disease between mild and very severe. The rheumy speaking was very opinionated but VERY agressive. Her opinion was first of all NEVER,EVER put a systemic child on Plaquenil because it can cause Macrophage activation Syndrome.She infuriated me but then again she spent all the years in medical school. If systemic symptoms have not been present for some time TNF inhibitors are worth a shot and can work well. Kiniret seems to work much better on SoJRA then TNF inhibitors unless a child has Poly JRA. Interlukin 6 is a major role in SoJRA and the trial drug MRA is being studied in Japan.I first heard about this drug when was still on the waiting list for Enbrel,from Georgina of cource.At the time it was being studied in adults only.They learned that the average adult RA patiant had very little responce but the ones that had body wide(systemic)disease,it was remarkable,My heart sunk just knowing that it would be droped,due to the lack of responce. It is very important to look into CARRA because unless I heard wrong they have no interst in clinical trials beyond Asia and Europe.This has been refered in Japanese papers as a cure for SOJRA.Cincinnati childrens told us had a 50/50 chance of responding to Enbrel because Interlukin 6 is the key bad guy. The session on SoJRA got way off topic,which was very dissapointing to us,so much time was wasted talking about things that were important but way off topic. The highly opinionate DR. said that if MTX didn't work,add Enbrel,then add Cyclosporine,then add Cytoxin(Nasty)Then add some kind of infusion,IVIG,some sort of immuglobin ,then do stem cell transplant.MRA will someday be the standard drug therapy for SoJRA,but is several years away.Imposible if the drug companies don't want to do trials in the USA.Support CARRA and gave a good description of what it was. To close, some children will always need a maintinance dose of steroids but her theory was also something I have never heard of. You give a very large dose for 4-5 days then nothing for 3 weeks,she was also talking oral,not IV pulse.Very upsetting for Val.You keep doing this until you can do the high doses further apart and taper that way. Coleen may be new but is highly educated and I am sure as soon as she gets used to how things work can explain better.She will be a HUGE assest to this list. Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Folks, Thanks for all the feedback from the conference. I wasn't able to attend this year, but I'm interested in the talk about systemic jra. If anyone went to that talk and could write about what was said, I'd really appreciate it. Thanks, and good to hear that the conference went well. (and Ezra, 8 year old systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi Becki, Thanks so much for the run down on the talk. It seems like this doctor is not only aggressive in how she treats arthritis, she is also aggressive in how she treats people:) It sounds like the parents who were at the talk knew more about meds (and had more opinions about them) than the doctor thought they should. I would have found that frustrating. What is CARRA? I haven't heard of it. Ezra is doing well. He is taking remicade, mtx, thalidomide and Arava, which in my opinion is quite a lot of medicine. But he's going to camp, running and playing and doing well. He has been off of prednisone for a year now, and has gotten taller and thinner, which is wonderful to see. I appreciate you taking the time to tell me about the talk. I hope to go to the Rhode Island conference next year. (and Ezra, 8 year old systemic) On 7/29/04 1:51 AM, " Arthurnator@... " <Arthurnator@...> wrote: > Hi , > Haven't heard from you in a long time.I hope Ezra is atleast stable right now. > SoJRA is a variable disease between mild and very severe. > The rheumy speaking was very opinionated but VERY agressive. > Her opinion was first of all NEVER,EVER put a systemic child on Plaquenil > because it can cause Macrophage activation Syndrome.She infuriated me but then > again she spent all the years in medical school. > If systemic symptoms have not been present for some time TNF inhibitors are > worth a shot and can work well. > Kiniret seems to work much better on SoJRA then TNF inhibitors unless a child > has Poly JRA. > Interlukin 6 is a major role in SoJRA and the trial drug MRA is being studied > in Japan.I first heard about this drug when was still on the waiting > list for Enbrel,from Georgina of cource.At the time it was being studied in > adults only.They learned that the average adult RA patiant had very little > responce but the ones that had body wide(systemic)disease,it was remarkable,My > heart > sunk just knowing that it would be droped,due to the lack of responce. > It is very important to look into CARRA because unless I heard wrong they > have no interst in clinical trials beyond Asia and Europe.This has been > refered > in Japanese papers as a cure for SOJRA.Cincinnati childrens told us had > a > 50/50 chance of responding to Enbrel because Interlukin 6 is the key bad guy. > The session on SoJRA got way off topic,which was very dissapointing to us,so > much time was wasted talking about things that were important but way off > topic. > The highly opinionate DR. said that if MTX didn't work,add Enbrel,then add > Cyclosporine,then add Cytoxin(Nasty)Then add some kind of infusion,IVIG,some > sort of immuglobin ,then do stem cell transplant.MRA will someday be the > standard > drug therapy for SoJRA,but is several years away.Imposible if the drug > companies don't want to do trials in the USA.Support CARRA and gave a > good > description of what it was. > To close, > some children will always need a maintinance dose of steroids but her theory > was also something I have never heard of. > You give a very large dose for 4-5 days then nothing for 3 weeks,she was also > talking oral,not IV pulse.Very upsetting for Val.You keep doing this until > you can do the high doses further apart and taper that way. > Coleen may be new but is highly educated and I am sure as soon as she gets > used to how things work can explain better.She will be a HUGE assest to this > list. > Hugs > Becki and 6systemic > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi , took wonderful notes and her post on Carra came through just a day or two ago.She explains it much better then I can but I did pick up all the literature it's just finding it.I will hunt for it today. Try not to worry about Ezras drug regimine.He's up and moving and having fun.We don't know what these drugs might do to our children in the future but we also know what can happen to them now if the disease is left out of control. Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
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