Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 dear group..i would like to know if anyone has noticed that on tv commercials that advertise about meds for arthritis..only show adults..i think if they would advertise about children also..the message would get out more that children suffer with arthritis..then when a parent finds out their son/daughter has this..there wouldn't be so much confusion to go along with the knowledge that your child has something that an adult usually gets. i never even heard of jra until tabitha was diagnosed with this back in 1989..so many people tried to say it was my fault she had gotten this..because like i said nobody really knows about jra unless they have to deal with it.....well good luck to all and take care...........karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Hi Suzie, We also went to UCSF this past week and signed up for the study. I am so glad to hear Chrissy is doing well. Its funny I just got done reading a posting about her and the arava and we saw the doctors Thursday and they mention perhaps trying it again. r (3 systemic) tried it last fall but October hit and the temp dropped and he became worse. He was on it for about 2 months with no results. It so hard to know what works and what does not with Ky's disease being so active. I am sure with Chrissy and others doing well Lenny and Dr Von Shaffen thought about it again. Currently we are going down every two weeks so we will see. Pamela >From: suzie s <suzzzies2000@...> >Reply- > >Subject: clinical study >Date: Sat, 16 Jun 2001 17:23:59 -0700 (PDT) > >Hi Georgina,and everyone > >Yes Chrissy does seem to be doing well, and the >doctors are baffled. When shes good shes great, but >when shes bad , shes the worst. I guess each case is >so individual, and every drug works so differently in >each child. > > was just enrolled in her first clinical >study through the university of San Francisco. There >will be no direct benefit to us, but hopefully by >studying her they can learn more and help other >children, wouldn't it be wonderful if they found a >cure!!!!! > > is as all of our children an interesting >systemic case and they have asked us to participate in >a couple of clinical studies that only require a small >amount of blood to be taken in addition when her >regular labs are scheduled. She is very excited with >the idea of being involved. So I thought I would >share this with all of you. > >Suzie >--- Georgina <gmckin@...> wrote: > > Hi Suzie, > > > > ooooh! The Arava people would probably just love to > > hear that second > > sentence! It might be a great marketing aid for them > > I am so glad to > > hear that your daughter is doing so much better, > > though. She went > > through some very rough times and it looks like > > things may finally be > > turning around again. I'm glad it looks like things > > are under control. > > And I hope she has continued improvements. > > > > Take Care, > > Georgina > > > > suzie s wrote: > > > > > > Jeannie, > > > My daughter age 12, systemic diagnosed 5 years > > ago, > > > recently started taking arava. She is doing > > extremely > > > well on it, and has turned her wheelchair in for > > > roller skates..... She looks great and has a appt > > > tomorrow to get the labs and see how all that > > looks. > > > I will keep you updated on how she is doing. She > > is > > > currently on pred 20 mg, arava, indomethecin, > > > sulindac,prilosec,and a muscle relaxer..... good > > luck > > > I hope it works well for you... > > > Suzie > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Dear Just read your post and I've always wondered the same thing! It seems that everyone thinks of arthritis as an old people's disease. I know it's also a very serious disease for them (my mother has it) but like you said why do the commercials and advertisements only target this age group? I know we all are very busy taking care of our kids etc.. but I think it would be a good idea for all of us to write to these companies and explain what meds our kids are on and the fact that they have arthritis too. Maybe then these companies would realize the impact arthritis has on our kids (and our lives). So I encourage everyone out there to write a letter(s) and see if we can change this. Like said, if it would get out there in advertising then more people would know about it and maybe somewhere someone would push that much harder to find a cure! P.S. Just a quick update on Katelyn (poly) She came down with a very bad case of strep throat last week and was in pretty bad shape. Had to be pulled off arthritis meds so high doses of antibiotics could work. Is now starting to feel better though arthritis is " kicking in " more in her hips and legs (maybe aggravating necrosis problem?) Was supposed to start back to pt for hips but will have to wait till back on meds. (Thank God all our rain has finally let up!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Pam, I hope it works for you this time, until now nothing had worked for christine, or it worked short term, she seems to build up a resistance to the meds quite quickly and I am hoping and praying that this is not the case with the arava. She is doing so incredibly well the doctors are shaking their heads, I think that's one of the reasons I find it so hard. When she is doing well its like she never had it, or its disappeared, but when it comes back its 10 times worse than the last time. I will keep praying for you and yours, Suzie --- Pamela Reagan <pcflyn@...> wrote: > Hi Suzie, > We also went to UCSF this past week and signed up > for the study. I am so > glad to hear Chrissy is doing well. Its funny I > just got done reading a > posting about her and the arava and we saw the > doctors Thursday and they > mention perhaps trying it again. r (3 systemic) > tried it last fall but > October hit and the temp dropped and he became > worse. He was on it for > about 2 months with no results. It so hard to know > what works and what does > not with Ky's disease being so active. I am sure > with Chrissy and others > doing well Lenny and Dr Von Shaffen thought about it > again. Currently we > are going down every two weeks so we will see. > Pamela > > > >From: suzie s <suzzzies2000@...> > >Reply- > > > >Subject: clinical study > >Date: Sat, 16 Jun 2001 17:23:59 -0700 (PDT) > > > >Hi Georgina,and everyone > > > >Yes Chrissy does seem to be doing well, and the > >doctors are baffled. When shes good shes great, > but > >when shes bad , shes the worst. I guess each case > is > >so individual, and every drug works so differently > in > >each child. > > > > was just enrolled in her first clinical > >study through the university of San Francisco. > There > >will be no direct benefit to us, but hopefully by > >studying her they can learn more and help other > >children, wouldn't it be wonderful if they found a > >cure!!!!! > > > > is as all of our children an interesting > >systemic case and they have asked us to participate > in > >a couple of clinical studies that only require a > small > >amount of blood to be taken in addition when her > >regular labs are scheduled. She is very excited > with > >the idea of being involved. So I thought I would > >share this with all of you. > > > >Suzie > >--- Georgina <gmckin@...> wrote: > > > Hi Suzie, > > > > > > ooooh! The Arava people would probably just love > to > > > hear that second > > > sentence! It might be a great marketing aid for > them > > > I am so glad to > > > hear that your daughter is doing so much better, > > > though. She went > > > through some very rough times and it looks like > > > things may finally be > > > turning around again. I'm glad it looks like > things > > > are under control. > > > And I hope she has continued improvements. > > > > > > Take Care, > > > Georgina > > > > > > suzie s wrote: > > > > > > > > Jeannie, > > > > My daughter age 12, systemic diagnosed 5 years > > > ago, > > > > recently started taking arava. She is doing > > > extremely > > > > well on it, and has turned her wheelchair in > for > > > > roller skates..... She looks great and has a > appt > > > > tomorrow to get the labs and see how all that > > > looks. > > > > I will keep you updated on how she is doing. > She > > > is > > > > currently on pred 20 mg, arava, indomethecin, > > > > sulindac,prilosec,and a muscle relaxer..... > good > > > luck > > > > I hope it works well for you... > > > > Suzie > > > > > > > > >__________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 In a message dated 6/18/01 7:48:51 PM !!!First Boot!!!, suzzzies2000@... writes: << When she is doing well its like she never had it, or its disappeared, but when it comes back its 10 times worse than the last time. >> Yikes!! You just scared me to death. My daughter is currently in the category or it seems like it disappeared or that she never had it. What you just said is my greatest fear. I remain cautiously optimistic. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Yes , YOU are so right, they DON'T show children in any ad's for any of the Arthritis drug's. And I think the reason for that is, because ,it's not good copy for the companies? or maybe they just think there's not ENOUGH, children effected by this, to be profitable. I agree, that if there were more ad's showing the amount of children affected by Arthritis, people might just start to question, why is this and let's do something about it. Even my self , having been diagnosed 33 yrs. ago, had no IDEA! of the number of little children, suffering from JRA ! I guess we just have to keep fighting the fight, until someone, finally opens their eyes, or until some celeb's child is diagnosed, with JRA! A sad cometary, on humanity. Prayers and Good Wishes to All ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Diane I didn't mean to scare you, how many flares has your daughter had. has established an unusual pattern (or thats what they say) she has remitted both previous flares for 10 months with no meds. Then the next flare comes back 10 times worse than the last one. The first went away with no meds and just had a fever and rash. The second was fever, rash and joint swelling with pain and required some therepy, naproxen, and 15 mg of methotrexate then she remitted for 10 months. This one came and she was in a wheelchair in three weeks and 50 mg of methotrexate, 20 mg of pred along with a long list of others wouldn't touch it. Finally the Arava seems to be working wonders, Hopefully she doesn't become resistant to it as she does with the other meds. The doctors have decided to keep her on meds because of this and we will take longer tapering her off of some, but not take her totally off. I have heard that some children stay in remission And I hope this is your daughters case. Some only have one major flare. Others remit for years. Unfortunately there are no rules, But stay optimistic, doesn't seem to be the norm. Suzie --- dbornscheu@... wrote: > In a message dated 6/18/01 7:48:51 PM !!!First > Boot!!!, > suzzzies2000@... writes: > > << When she > is doing well its like she never had it, or its > disappeared, but when it comes back its 10 times > worse > than the last time. >> > > Yikes!! You just scared me to death. My daughter > is currently in the > category or it seems like it disappeared or that she > never had it. What you > just said is my greatest fear. I remain cautiously > optimistic. > > Diane > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Suzie- I've heard a few stories like s. was diagnosed last July. She was affected in only one knee. It remained swollen until November 1 when she had a joint injection. Since then, she has been 100% symptom-free. When I look at how perfect her knee is now, I can't imagine it coming back. Of course, I know it can. It must be awful to see your daughter doing so great for 10 mos. and then having it come back worse than before. I hope her next remission is permanent. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Diane, you can expect that, yes with this jra, it's a regular, roller coster ride. Localized flares come and go. At least that's been my experience with my jra, for the past 33 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi , Thanks for the link. I checked it out and registered. Looks like a nice site. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
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