Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 is currently taking Kineret, Prednisone, Naproxen, and iron supplements. > > Hi Misty, > That is great news about ! I remember that he was in the hospital over the summer. If you don't mind me asking, what is taking? > > is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and we had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for 2-3 weeks and then try and take 5 mg every other day. We are in a holding pattern waiting for the new IL-6 medicine to become available. Take care. > Sophie > 's mom, systemic jra, age 9 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Sophie,how long has been on steroids? Going from 5mg a day to 5mg every other day is pretty extreme if it's been a while. Becki and 11 systemic since 2 now #24 football punter aka the Beast! ________________________________ From: misty_o_c <misty_o_c@...> Sent: Friday, August 28, 2009 10:00:42 PM Subject: Re: Update on is currently taking Kineret, Prednisone, Naproxen, and iron supplements. > > Hi Misty, > That is great news about ! I remember that he was in the hospital over the summer. If you don't mind me asking, what is taking? > > is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and we had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for 2-3 weeks and then try and take 5 mg every other day. We are in a holding pattern waiting for the new IL-6 medicine to become available. Take care. > Sophie > 's mom, systemic jra, age 9 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 She's been on and off over the last year. She had been on 5mgs and we decreased by 1 mg each week until 2 mgs and then we discontinued. She then was off for about a week. We started back at 5 mgs/day and are supposed to continue that for 2-3 weeks and then try every other day. Does that seem extreme? I haven't had the heart to research steroid dosages as I would much rather she didn't have them at all. However, without any steroids her hands were in really bad shape. She couldn't pull her pants up or open doors. I knew that she needed something in order to start school again. > > > > Hi Misty, > > That is great news about ! I remember that he was in the hospital over the summer. If you don't mind me asking, what is taking? > > > > is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and we had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for 2-3 weeks and then try and take 5 mg every other day. We are in a holding pattern waiting for the new IL-6 medicine to become available. Take care. > > Sophie > > 's mom, systemic jra, age 9 > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Wonderful news!!! Sent from my iPod On Jan 12, 2010, at 5:11 AM, " slevindoski " <slevindoski@...> wrote: > Good morning! I have been hesitant to post this update, as the ups > and downs of systemic jra have really made me a little superstitious. > > After two years of a flare....while trying kineret and then > thalidomide..... is finally symptom-free. I asked that she be > taken off thalidomide in October, because she was still on 5 mgs of > pred every other day with swelling in her fingers, knees and other > joints. I felt that I didn't want to risk the nerve problems if > thalidomide wasn't working anyway. We put her back on humira until > we could somehow get her the new med actemra. Well, two weeks after > starting humira she started really improving. I was able to get her > off the prednisone and she even signed up for basketball. The first > time EVER that she has been well enough to play. She had been on > Humira in the past and it helped but she had hip problems and other > joints swell up from time to time. We don't know why Humira is > working so well this time. But, we will take it! She had her first > basketball game on Saturday, and I wasn't lookign forward to it. I > figured she would be lagging behind and sore and limping.....But, it > wasn't like that at all. She was running very hard, and you would > have had no idea what she has been through over the last two years. > I hope this lasts at least until the new meds are available. > > I wish all of our kids well and pray for them every day. Take care. > Sophie > 's mom, systemic jra, age 9 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 That is wonderful news!!!!!! Hope it continue's & Grant (12, psoriatic/uveitis) > > Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. > > After two years of a flare....while trying kineret and then thalidomide..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping.....But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. > > I wish all of our kids well and pray for them every day. Take care. > Sophie > 's mom, systemic jra, age 9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Sophie..Thank you so much for sharing this!!! It's so nice to read good news! I hope she stays well forever.  Beth & Hannah, 13, OA, HMJS, vitamin d deficiency, asthma " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: toivonen4 <toivonen4@...> Sent: Tue, January 12, 2010 8:58:39 AM Subject: Re: Update on  That is wonderful news!!!!!! Hope it continue's & Grant (12, psoriatic/uveitis) > > Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. > > After two years of a flare....while trying kineret and then thalidomide. ..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping..... But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. > > I wish all of our kids well and pray for them every day. Take care. > Sophie > 's mom, systemic jra, age 9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Horray for ! It is always wonderful to hear a JIA kid getting to be an actual kid. I am also on Humira right now and it's the first time I have felt like me in a long time. I hope it keeps working and that she gets to enjoy basketball and just being a kid. With Love, (MCTD, 25..dx 6.5) From: slevindoski <slevindoski@...> Subject: Update on Date: Tuesday, January 12, 2010, 5:11 AM Â Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. After two years of a flare....while trying kineret and then thalidomide. ..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping..... But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. I wish all of our kids well and pray for them every day. Take care. Sophie 's mom, systemic jra, age 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 What wonderful news!!! Michele ( 22, spondy) .. ________________________________ From: [mailto: ] On Behalf Of slevindoski Sent: Tuesday, January 12, 2010 7:12 AM Subject: Update on Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. After two years of a flare....while trying kineret and then thalidomide..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping.....But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. I wish all of our kids well and pray for them every day. Take care. Sophie 's mom, systemic jra, age 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Yeah!! Let it last!! Kirsten mom to , spondy, age 5 > > Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. > > After two years of a flare....while trying kineret and then thalidomide..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping.....But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. > > I wish all of our kids well and pray for them every day. Take care. > Sophie > 's mom, systemic jra, age 9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Sophie-  That is fantastic news! I have goosebumps reading the post again and again - because as you know it takes me back about... two years! I think Caitlin and 's disease courses have so much in common... and I hope beyond anything that this is merely the beginning of a LONG, quiet period for !  Enjoy each one of these running, basketball playing days  In a few months, I bet you'll be surprised about how little remembers the bad days, while for you it will still be fresh in your heart. I think JIA gives moms post-traumatic stress disorder to some small degree.....  SUCH great news! Thank you so much for posting - I think of you all the time. Best hopes and blessings to you- Colleen From: slevindoski <slevindoski@...> Subject: Update on Date: Tuesday, January 12, 2010, 5:11 AM  Good morning! I have been hesitant to post this update, as the ups and downs of systemic jra have really made me a little superstitious. After two years of a flare....while trying kineret and then thalidomide. ..... is finally symptom-free. I asked that she be taken off thalidomide in October, because she was still on 5 mgs of pred every other day with swelling in her fingers, knees and other joints. I felt that I didn't want to risk the nerve problems if thalidomide wasn't working anyway. We put her back on humira until we could somehow get her the new med actemra. Well, two weeks after starting humira she started really improving. I was able to get her off the prednisone and she even signed up for basketball. The first time EVER that she has been well enough to play. She had been on Humira in the past and it helped but she had hip problems and other joints swell up from time to time. We don't know why Humira is working so well this time. But, we will take it! She had her first basketball game on Saturday, and I wasn't lookign forward to it. I figured she would be lagging behind and sore and limping..... But, it wasn't like that at all. She was running very hard, and you would have had no idea what she has been through over the last two years. I hope this lasts at least until the new meds are available. I wish all of our kids well and pray for them every day. Take care. Sophie 's mom, systemic jra, age 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 I know that n's macrophage activation syndrome gave me post traumatic stress disorder. I used to think it was kind of a made up disorder with the war veterans. Not anymore. (n, 21 next Tuesday, systemic) On Jan 14, 2010, at 10:37 AM, Colleen wrote: > Hi Sophie- > > That is fantastic news! I have goosebumps reading the post again > and again - because as you know it takes me back about... two > years! I think Caitlin and 's disease courses have so much > in common... and I hope beyond anything that this is merely the > beginning of a LONG, quiet period for ! > > Enjoy each one of these running, basketball playing days In a > few months, I bet you'll be surprised about how little > remembers the bad days, while for you it will still be fresh in > your heart. I think JIA gives moms post-traumatic stress disorder > to some small degree..... > > SUCH great news! Thank you so much for posting - I think of you > all the time. > Best hopes and blessings to you- > Colleen > > > > From: slevindoski <slevindoski@...> > Subject: Update on > > Date: Tuesday, January 12, 2010, 5:11 AM > > > > Good morning! I have been hesitant to post this update, as the ups > and downs of systemic jra have really made me a little superstitious. > > After two years of a flare....while trying kineret and then > thalidomide. .... is finally symptom-free. I asked that she > be taken off thalidomide in October, because she was still on 5 mgs > of pred every other day with swelling in her fingers, knees and > other joints. I felt that I didn't want to risk the nerve problems > if thalidomide wasn't working anyway. We put her back on humira > until we could somehow get her the new med actemra. Well, two weeks > after starting humira she started really improving. I was able to > get her off the prednisone and she even signed up for basketball. > The first time EVER that she has been well enough to play. She had > been on Humira in the past and it helped but she had hip problems > and other joints swell up from time to time. We don't know why > Humira is working so well this time. But, we will take it! She had > her first basketball game on Saturday, and I wasn't lookign forward > to it. I figured she would be lagging behind > and sore and limping..... But, it wasn't like that at all. She was > running very hard, and you would have had no idea what she has been > through over the last two years. I hope this lasts at least until > the new meds are available. > > I wish all of our kids well and pray for them every day. Take care. > Sophie > 's mom, systemic jra, age 9 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 That is fantastic news Tonia. You must be so relieved. It is very interesting to hear that his spasms have receded so much since taking anti-depressants. I honestly believe that they could be useful and effective for more people if they were willing to try them. I think that maybe some people do not like the idea of them and associate them with mental illness, but many drugs can be used for different reasons. Wasn't Viagra developed for some sort of cardiac illness? It didn't seem to work for that, but a lot of men had an interesting side effect....... Science is fascinating!!! From: Tonia <tcooper1973@...> Subject: Update on achalasia Date: Wednesday, 3 February, 2010, 13:11 Â He has been on the Nifidiphine extended release meds AND HIS ANTI DEPRESSENT MED ELAVIL now for a few weeks as well as some counseling. So far so good! No real bad spasms.NOTHING LIKE WE HAVE BEEN DEALING WITH .He has had 2 or 3 but very mild and he did have a cold so that always flares them up.He has used the flexril when he had them but he says didnt really give any relief from it. He is going back to school this week after many weeks off.He has a ton of catching up to do!!! Lets hope all keeps going well.If we can put this surgery off for a while then thats what we are gonna do.We will be going to see Dr Luketich though soon anyway to just touch base and talk so when the time comes we will have and know the basics of whats going on. Thanks for all the support friends!!! Tonia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Hi Tonia I have often thought about you and wondering how he is getting on and I am so pleased that finally things are calming down for him and the he is able to go back to school. I hope that your meeting with Dr Luketich goes well. Pippa > > He has been on the Nifidiphine extended release meds AND HIS ANTI DEPRESSENT MED ELAVIL now for a few weeks as well as some counseling. So far so good! No real bad spasms.NOTHING LIKE WE HAVE BEEN DEALING WITH .He has had 2 or 3 but very mild and he did have a cold so that always flares them up.He has used the flexril when he had them but he says didnt really give any relief from it. > He is going back to school this week after many weeks off.He has a ton of catching up to do!!! > Lets hope all keeps going well.If we can put this surgery off for a while then thats what we are gonna do.We will be going to see Dr Luketich though soon anyway to just touch base and talk so when the time comes we will have and know the basics of whats going on. > Thanks for all the support friends!!! > Tonia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 God is good. (n, 21, systemic) On Mar 25, 2010, at 11:53 AM, carneyval@... wrote: > > > Hello dear friends. I thought it was about time to let you guys > know how incredibly well has been doing. I have avoided > using what I refer to as the " R " word for a long time - as in the > past when would really seem to be improving we would drop > the steriods 1/2 cc and bam he would have a horrible flare and end > up back inthe hospital and then on doses increasingly higher than > he had ever seen before. I always felt like I was waiting for the > next flare and for so very long, we never seemed to have to wait > long. The reality now is that it has been over two years since > 's last flare. It has been about 4 years since his last > hospitalization!!!! And now - are you ready for this???? It has > been 9 months since his last steriod dose, 9 months since his last > cyclosporine dose & 6 months since his last methotrexate > shot!!!!!!! That's right - my boy has been medication free for 6 > months!!! (With the exceptiion of the very rare motrin.) The rheumy > is using the " R " word - but I am not quite ready for that... He > does have the rare stiff morning and ocassional ache - but the ache > is so rare that it may be from PE or baseball - but I am continuing > to be vigilant. We still have concerns - his growth, his bone > density, his back issues related to the compression fracture - but > I am really starting to believe in that light at the end of the > tunnel!! Those of you who have been around awhile remember well how > much struggled - and as much as I was afraid to say out loud > how well he is doing (like when he went a whole school year without > being hospitalized for the first time - I didn't say anything til > the last week of school!) - but there is hope - and there can be > better times ahead! > > Val > Rob's Mom (12, systemic) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Val, This is awesome and thank you so much for sharing!! Beth & Hannah, 13, OA, HMJS, vitamin D deficiency; asthma " We cannot direct the wind, but we can adjust our sails " ________________________________ From: " carneyval@... " <carneyval@...> Sent: Thu, March 25, 2010 1:53:21 PM Subject: Update on  Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization! !!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 What a wonderful update!! Love to hear our success stories! Pretty soon Val you will be shouting the " R " word from the rooftops! Michele ( 22, spondy) P. ________________________________ From: [mailto: ] On Behalf Of carneyval@... Sent: Thursday, March 25, 2010 1:53 PM Subject: Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 I'm sitting here with tears in my eyes - WOW and AMAZING and YIPEE!!!!!!!!!!!!!!!!!!!!! I am rejoicing with you Val! Tell I said hello and to keep being amazing!! and Rob 20 JAS Update on > > > > Hello dear friends. I thought it was about time to let you > guys know how incredibly well has been doing. I > have avoided using what I refer to as the " R " word for a long > time - as in the past when would really seem to be > improving we would drop the steriods 1/2 cc and bam he would > have a horrible flare and end up back inthe hospital and then on > doses increasingly higher than he had ever seen before. I always > felt like I was waiting for the next flare and for so very long, > we never seemed to have to wait long. The reality now is > that it has been over two years since 's last flare. > It has been about 4 years since his last > hospitalization!!!! And now - are you ready for > this???? It has been 9 months since his last steriod dose, > 9 months since his last cyclosporine dose & 6 months since his > last methotrexate shot!!!!!!! That's right - my boy has been > medication free for 6 months!!! (With the exceptiion of the very > rare motrin.) The rheumy is using the " R " word - > but I am not quite ready for that... He does have the rare > stiff morning and ocassional ache - but the ache is so rare that > it may be from PE or baseball - but I am continuing to be > vigilant. We still have concerns - his growth, his bone > density, his back issues related to the compression fracture - > but I am really starting to believe in that light at the end of > the tunnel!! Those of you who have been around awhile > remember well how much struggled - and as much as I was > afraid to say out loud how well he is doing (like when he went a > whole school year without being hospitalized for the first time - > I didn't say anything til the last week of school!) - but there > is hope - and there can be better times ahead! > > Val > Rob's Mom (12, systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Sooooo nice to hear some good news! It also makes me feel better about the future for na. Thanks you so much for sharing. Don't be afraid to celebrate!!!!! ne & na 5 (Poly & Uveitis MTX Remicade) > > I'm sitting here with tears in my eyes - WOW and AMAZING and YIPEE!!!!!!!!!!!!!!!!!!!!! I am rejoicing with you Val! Tell I said hello and to keep being amazing!! > and Rob 20 JAS > > Update on > > > > > > > > > > Hello dear friends. I thought it was about time to let you > > guys know how incredibly well has been doing. I > > have avoided using what I refer to as the " R " word for a long > > time - as in the past when would really seem to be > > improving we would drop the steriods 1/2 cc and bam he would > > have a horrible flare and end up back inthe hospital and then on > > doses increasingly higher than he had ever seen before. I always > > felt like I was waiting for the next flare and for so very long, > > we never seemed to have to wait long. The reality now is > > that it has been over two years since 's last flare. > > It has been about 4 years since his last > > hospitalization!!!! And now - are you ready for > > this???? It has been 9 months since his last steriod dose, > > 9 months since his last cyclosporine dose & 6 months since his > > last methotrexate shot!!!!!!! That's right - my boy has been > > medication free for 6 months!!! (With the exceptiion of the very > > rare motrin.) The rheumy is using the " R " word - > > but I am not quite ready for that... He does have the rare > > stiff morning and ocassional ache - but the ache is so rare that > > it may be from PE or baseball - but I am continuing to be > > vigilant. We still have concerns - his growth, his bone > > density, his back issues related to the compression fracture - > > but I am really starting to believe in that light at the end of > > the tunnel!! Those of you who have been around awhile > > remember well how much struggled - and as much as I was > > afraid to say out loud how well he is doing (like when he went a > > whole school year without being hospitalized for the first time - > > I didn't say anything til the last week of school!) - but there > > is hope - and there can be better times ahead! > > > > Val > > Rob's Mom (12, systemic) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Val, Words can not explain the joy and happiness I am feeling right now.Robbie has been through so much and this is truly a blessing. Prayers that the R continues for a very,very long time. Love you, Becki and ________________________________ From: " carneyval@... " <carneyval@...> Sent: Thu, March 25, 2010 1:53:21 PM Subject: Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization! !!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Val, this is absolutely wonderful news!!! Any chance you'll be at the DC walk this year? It seems like forever since we last saw you. Liz From: [mailto: ] On Behalf Of carneyval@... Sent: Thursday, March 25, 2010 2:53 PM Subject: Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Wow, that is amazingly good news! Love hearing stories like yours....it's HOPE to hold onto... -Hadley > > > > > Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! > > Val > Rob's Mom (12, systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 That is amazing news! It is so encouraging to here of positive outcomes!! Thanks for sharing! Billie-jo and a (12 poly) Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rhe umy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Yeah!!!Thanks for sharing. Good news is sweet and gives us hope. , (16,poly?) > > > > > Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! > > Val > Rob's Mom (12, systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 We are so glad that things are looking good. Now take a deep breath and relax. Do not sit there waiting for the flare to come. Just enjoy it and have fun. And stay around as you have so much to offer those that are now going through what you have been through. It is good to hear the good reports. Thank you. Veri & Jaye 16 poly Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rhe umy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Wonderful news! So happy you are seeing the light at the end of a very long tunnel...you both deserve it! & , 6, poly (4/09) plus a bunch of other 'stuff' Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
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