Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 hello everyone. we have been very busy here dakota has had a very bad set back we thought that we were going to have it licked but that is not the case . we were almost done with the prelone and we got to .5ml and he started flaring again and it turned out to be a really bad one so the reumey put him on methatoxate subq every week and increased the prelone again back to a teaspoon once a day and that went well for about two weeks and then he got bronchitiss and he got really sick with it and it set off a really bad flare they gave hime higer doses of steriods and it wasnt touching it. he was in the hospital for three days here in roseburg and then he went to portland and was in the hospital there for three more days and they gave him really big does of steriods and put him on cysoloporine .3ml twice a day and still he has been having break though fevers and he is in so much pain this time they have him on codine . and he is still on the prelone 1 tsp twice aday and naproxen 6ml twice a day and a blodd pressure med and getting the methatroxate weekly. the dr says that this is sometimes the norm of systmic. and that he still could have a chance to go into remission . but i just dont know anymore . it this the norm does it get better . i am just so confused and tired . but dakota is so brave it amazes me sometimes how strong he is . well thanks for listening Rosetta bray dakota almost 3 in two weeks systmic feb 04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Rosetta, Hang in there, it will get better. This disease can be as hard on the parent as it is on the child. Feel free to look us up whenever you are in Portland. n sees Dr. Borzy, but we go to Kingsbury too for a second opinion sometimes. (n,15,systemic) codys flare hello everyone. we have been very busy here dakota has had a very bad set back we thought that we were going to have it licked but that is not the case . we were almost done with the prelone and we got to .5ml and he started flaring again and it turned out to be a really bad one so the reumey put him on methatoxate subq every week and increased the prelone again back to a teaspoon once a day and that went well for about two weeks and then he got bronchitiss and he got really sick with it and it set off a really bad flare they gave hime higer doses of steriods and it wasnt touching it. he was in the hospital for three days here in roseburg and then he went to portland and was in the hospital there for three more days and they gave him really big does of steriods and put him on cysoloporine .3ml twice a day and still he has been having break though fevers and he is in so much pain this time they have him on codine . and he is still on the prelone 1 tsp twice aday and naproxen 6ml twice a day and a blodd pressure med and getting the methatroxate weekly. the dr says that this is sometimes the norm of systmic. and that he still could have a chance to go into remission . but i just dont know anymore . it this the norm does it get better . i am just so confused and tired . but dakota is so brave it amazes me sometimes how strong he is . well thanks for listening Rosetta bray dakota almost 3 in two weeks systmic feb 04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Dear Rosetta, The battle with this disease is typically a long one. I read your message and had many memories about our son suffering (as your little three year old does now)....it just kills me to think about it. However, there is reason for hope! Our son was diagnosed at a year of age and is now 4. He has been a VERY sick little guy...on mega dose steroids, MTX and lots of Motrin for pain. He was finally started on KINERET this January and it has put him into remission. He hasn't had pain, rash, swollen joints or fever since starting. It has been a miracle. I'm not sure if your child is a " canidate " for this drug yet...just being diagnosed in Feb.? But maybe you could discuss it with your doctor. Our son is seen at Texas ish Rite in Dallas...all of their children with systemic disease are responding wonderfully to this drug. Best of luck, marguerite and (4 systemic) > hello everyone. we have been very busy here dakota has had a very bad > set back we thought that we were going to have it licked but that is > not the case . we were almost done with the prelone and we got to .5ml > and he started flaring again and it turned out to be a really bad one > so the reumey put him on methatoxate subq every week and increased the > prelone again back to a teaspoon once a day and that went well for > about two weeks and then he got bronchitiss and he got really sick > with it and it set off a really bad flare they gave hime higer doses > of steriods and it wasnt touching it. he was in the hospital for three > days here in roseburg and then he went to portland and was in the > hospital there for three more days and they gave him really big does > of steriods and put him on cysoloporine .3ml twice a day and still he > has been having break though fevers and he is in so much pain this > time they have him on codine . and he is still on the prelone 1 tsp > twice aday and naproxen 6ml twice a day and a blodd pressure med and > getting the methatroxate weekly. the dr says that this is sometimes > the norm of systmic. and that he still could have a chance to go into > remission . but i just dont know anymore . it this the norm does it > get better . i am just so confused and tired . but dakota is so brave > it amazes me sometimes how strong he is . well thanks for listening > > Rosetta bray > dakota almost 3 in two weeks > systmic feb 04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 HiRosetta, Sorry Cody has had such a terrible flare.It's like this in the beginning and normal and yes there is still much hope for complete control.It's a whole trial and error thing and can take a while.For it took 25mg MTX sub-q,200mg Plaquenil,300mg Ibuprofin 3xdaily,12.5mg Enbrel 2xweek until we got off the steroids after 20 months.He has now been picture perfect for 18 months and just takes 5mg MTX and 25mg Enbrel 1x week. Keep your chin up and rememeber it can and does get better.This disease, no matter how impatiant we are , does teach us things take time. Hugs and Prayers Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
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