Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hello tisha, I assume you can just ask your pediatric rheumatologist for it....this drug is in the literature...it has been on the market for awhile...if he or she is unsure of dosage etc...have them contact the folks at Texas ish Rite in Dallas...our rheumatologist is the head and has written an abstract about her findings...Marilynn Punaro M.D. What stage is your child in the disease? Sincerely, Marguerite and (systemic 5, Texas) > Hello All, > had an appointment at Texas ish Rite in Dallas > yesterday. It was the second time in 4 years that we went with no > complaints (once earlier this spring)....what a blessing and hugh > relief. was diagnosed at a year of age and had been in a > constant flare for 3 1/2 years. The steroid pulses only seemed to > tone down the inflammation, the rash was daily, anemia, ESR 115-30, > swollen & painful joints, PLTs at times greater than 1 million...many > of you reading this have been here. Feeling " good " becomes a > realitive term...you never seem to get totaly healthy. > has been on high dose IV steroids, MTX, Enbrel and was > finally started on KINERET (this January). As many of you know, the > results were dramatic. His labs are normal, no swelling, rash, no > pain, no arthritis, no fevers....he looks and feels great. He has > gained 7 lbs since April and grown 3 1/2 inches...It has been a true > miracle. > The reason for this post is to give you all hope. After talking > with his rheumatologist, Marilynn Punaro...she informed me that they > know that systemic jra patients OVER PRODUCE INTERLEUKIN-1...it is a > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the PRECURSOR > to IL-6 (some of you may have heard about an IL-6 drug coming > available). She believes that you inhibit IL-1 formation with Kineret > and you stop the inflammaion cycle in these kids. She doesn't think > the IL-6 drug is the way to go (not to mention it isn't even > available in the US). They have studied Enbrel in systemic kids (on a > large scale) and it did not work (not to say that some of the kids > out there haven't responded...they may have...but for the severe > systemic kids Kineret appears to be the key). Her hopes is to study > Kineret on a larger group (she has had a hard time getting AMGEN to > support her study because it is a " small patient population " ) As you > know it is a very expensive drug that was originally developed for > adults (adults have not responded to it). She has published an > abstract recently describing Kineret in 10 patients ( being > #6). Nine out of the ten have responded dramatically like . > Only one patient hasn't responded...sadly enough...it may have been a > situation of too little too late...in that she is now 13 and has had > systemic symptoms since 18 months of age (it brought tears to my > eyes...god bless her..she is still experiencing fevers, etc.). She > thinks that Kineret should be tried as a first line thearpy EVEN > before STEROIDS in controlling inflammation in systemic patients. As > far as long term effects...we don't know...but, we don't know about a > lot of these medications that we are forced to try. She feels that it > is safer than some of the longer half life drugs (Enbrel and > Remicade). Because Kineret has such a short half life it is given as > a daily injection. > Well, I just wanted to share our experience and knowledge from > yesterday's visit. I hope it may help any of you out there that feel > lost and without hope in battling this disease. If anyone wants to > contact me about Kineret please email me directly at mwestfal " at " > ktc.com. > God Bless and Merry CHristmas, Marguerite and (systemic 5) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 well he is 2 years into it...not doing well at all.......but what if it is not avail in canada? margueritewestfall <mwestfal@...> wrote: Hello tisha, I assume you can just ask your pediatric rheumatologist for it....this drug is in the literature...it has been on the market for awhile...if he or she is unsure of dosage etc...have them contact the folks at Texas ish Rite in Dallas...our rheumatologist is the head and has written an abstract about her findings...Marilynn Punaro M.D. What stage is your child in the disease? Sincerely, Marguerite and (systemic 5, Texas) > Hello All, > had an appointment at Texas ish Rite in Dallas > yesterday. It was the second time in 4 years that we went with no > complaints (once earlier this spring)....what a blessing and hugh > relief. was diagnosed at a year of age and had been in a > constant flare for 3 1/2 years. The steroid pulses only seemed to > tone down the inflammation, the rash was daily, anemia, ESR 115-30, > swollen & painful joints, PLTs at times greater than 1 million...many > of you reading this have been here. Feeling " good " becomes a > realitive term...you never seem to get totaly healthy. > has been on high dose IV steroids, MTX, Enbrel and was > finally started on KINERET (this January). As many of you know, the > results were dramatic. His labs are normal, no swelling, rash, no > pain, no arthritis, no fevers....he looks and feels great. He has > gained 7 lbs since April and grown 3 1/2 inches...It has been a true > miracle. > The reason for this post is to give you all hope. After talking > with his rheumatologist, Marilynn Punaro...she informed me that they > know that systemic jra patients OVER PRODUCE INTERLEUKIN-1...it is a > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the PRECURSOR > to IL-6 (some of you may have heard about an IL-6 drug coming > available). She believes that you inhibit IL-1 formation with Kineret > and you stop the inflammaion cycle in these kids. She doesn't think > the IL-6 drug is the way to go (not to mention it isn't even > available in the US). They have studied Enbrel in systemic kids (on a > large scale) and it did not work (not to say that some of the kids > out there haven't responded...they may have...but for the severe > systemic kids Kineret appears to be the key). Her hopes is to study > Kineret on a larger group (she has had a hard time getting AMGEN to > support her study because it is a " small patient population " ) As you > know it is a very expensive drug that was originally developed for > adults (adults have not responded to it). She has published an > abstract recently describing Kineret in 10 patients ( being > #6). Nine out of the ten have responded dramatically like . > Only one patient hasn't responded...sadly enough...it may have been a > situation of too little too late...in that she is now 13 and has had > systemic symptoms since 18 months of age (it brought tears to my > eyes...god bless her..she is still experiencing fevers, etc.). She > thinks that Kineret should be tried as a first line thearpy EVEN > before STEROIDS in controlling inflammation in systemic patients. As > far as long term effects...we don't know...but, we don't know about a > lot of these medications that we are forced to try. She feels that it > is safer than some of the longer half life drugs (Enbrel and > Remicade). Because Kineret has such a short half life it is given as > a daily injection. > Well, I just wanted to share our experience and knowledge from > yesterday's visit. I hope it may help any of you out there that feel > lost and without hope in battling this disease. If anyone wants to > contact me about Kineret please email me directly at mwestfal " at " > ktc.com. > God Bless and Merry CHristmas, Marguerite and (systemic 5) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Hi Tisha, I'm Elly and I have Stills and a few other things like Fibromyalgia etc.Welcome to your new home,I say that because we consider ourselves family.It is great you are e-mailing us for your husband. By the way, what is his name?We are happy to have you here.As far as natural meds,I have had Stills since at least 92,thats when I was diagnosed and that took 4 years!I haven't found anything that really works other than at times heat or ice.We aren't allowed to reccomend anything in the way of drugs,though we can comment on the way they work on us,which can be very different from one person to the next.You might go to a natural food store and ask them what they think.I hope your husband feels comfortable enough to join us here.We have many men in this group and they tend to provide comic relief along with good advise.Feel free to vent any time you need to.We know how hard it is living with this disease and for spouses or partners it can be even harder.We know it hurts to see your spouse go through flares etc.Welcome home. Elly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Hi Tisha, I'm Elly and I have Stills and a few other things like Fibromyalgia etc.Welcome to your new home,I say that because we consider ourselves family.It is great you are e-mailing us for your husband. By the way, what is his name?We are happy to have you here.As far as natural meds,I have had Stills since at least 92,thats when I was diagnosed and that took 4 years!I haven't found anything that really works other than at times heat or ice.We aren't allowed to reccomend anything in the way of drugs,though we can comment on the way they work on us,which can be very different from one person to the next.You might go to a natural food store and ask them what they think.I hope your husband feels comfortable enough to join us here.We have many men in this group and they tend to provide comic relief along with good advise.Feel free to vent any time you need to.We know how hard it is living with this disease and for spouses or partners it can be even harder.We know it hurts to see your spouse go through flares etc.Welcome home. Elly Quote Link to comment Share on other sites More sharing options...
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