Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 In a message dated 2/11/03 7:26:47 PM Eastern Standard Time, twagner@... writes: > I'll just have to sell lots so I can buy a new camera. > Terri > Oh Terri- that's too bad about your camera!! Don't beat yourself up-accidents happen. Hopefully you'll sell a lot to buy another!!! Your display sounds great- glad you're happy with how it turned out! I hope to see it! Carol J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Guess the only reply is DUHHHH! You will never, ever forget that lesson! Kim > My display is set up and looks so pretty. I really, really wish I could > share a picture with you, but nooooooo ....I can't do that... not now. > Why??? > Read on...... > > 7th thru 11th grade I took photography.... double the classes. I was one of > the few they allowed to come and go basically any time I wanted in the > darkroom.... I was... shhh the teachers pet > I got my first 35mm camera from my Father in 6th grade.... first thing he > told me and the first thing your told in class EVERY SINGLE YEAR!!..... > Strap On " either on your wrist or around your neck incase you drop the > camera. So what did I NOT do tonight??? Strap on!!! UGH!!! I took a step > back to get the whole display in the shot and tripped over a little ramp by > the end of the counter for the bottle return and DROPPED my new digital > camera.... why?? because I didn't do the very first basic thing I ever > learned about photography!! . *picks up keyboard and repeatedly snacks > herself in the forehead with it* @@- ouch > > There... I feel better now..... guess if you want ot see my display you'll > have go to the B'ville Bottle and Can Return in River Mall *sigh* > > ok.... off to throw some sandwiches at the family for dinner errrr nicely > make them something to eat *smile* hehe... I'm no mood to cook though. I > might break the stove! LOL j/k > I'll just have to sell lots so I can buy a new camera. > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Hi Terri, I'm glad your display turned out so nice. I'm so sorry your camera is out of commission. I had mine outside while birdwatching along with my binoculars and bird guide. I forgot all of them on the picnic table. Of course it rained cats and dogs that night and I thought for sure it was ruined. It wouldn't turn on but after a few days of drying out it worked fine. I was so elated that I promptly went outside and left it in the rain again!! Hearing your story will hopefully remind me to use the wrist strap because I'm sure dropping would have been next on my agenda as I'm a real klutz. Wishing you lots of sales so you can get a new camera soon. H. UGH!!! My display is set up and looks so pretty. I really, really wish I could share a picture with you, but nooooooo ....I can't do that... not now. Why??? Read on...... 7th thru 11th grade I took photography.... double the classes. I was one of the few they allowed to come and go basically any time I wanted in the darkroom.... I was... shhh the teachers pet I got my first 35mm camera from my Father in 6th grade.... first thing he told me and the first thing your told in class EVERY SINGLE YEAR!!..... Strap On " either on your wrist or around your neck incase you drop the camera. So what did I NOT do tonight??? Strap on!!! UGH!!! I took a step back to get the whole display in the shot and tripped over a little ramp by the end of the counter for the bottle return and DROPPED my new digital camera.... why?? because I didn't do the very first basic thing I ever learned about photography!! . *picks up keyboard and repeatedly snacks herself in the forehead with it* @@- ouch There... I feel better now..... guess if you want ot see my display you'll have go to the B'ville Bottle and Can Return in River Mall *sigh* ok.... off to throw some sandwiches at the family for dinner errrr nicely make them something to eat *smile* hehe... I'm no mood to cook though. I might break the stove! LOL j/k I'll just have to sell lots so I can buy a new camera. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Aundrea has been off the steroids for one week, which is exactly how long she lasted the last time we tapered. Anyway, she went to bed last night just not feeling right and today she wakes up with the sore throat and swollen lymph nodes. Seems like every flare starts off for her with the sorethroat. The rash has been more prevalent since being off the steroids but I was hoping that would resolve on its own. Anyway, she went off to school. She was tearful but said that she wanted to try it for an hour or two. I don't want to put her back on the steroids! She has been on the MTX along with Plaquenil for 5 weeks now. Do you think that the MTX should start kicking in soon? We see the rheumy next Tues. (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -... UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. it suxs. I know exactly what you mean about the steriods. The MTX does take a long time to work.... I think it was closer to 8 weeks before we saw a little improvement in when he 1st started on it. Of course with each flare after that the MTX got increased up to its max and hes still not off the steriods. Im hoping its *just* a sore throat and not the start of a flare. Nick has a little cold and his voice is sore and horse sounding. Hes in good spirits though and doesnt have a temp so i packed him off to school. He even wants to go to extended day today!!! I hope Aundrea feels better and makes it though the day. Poor kid, just when she starts to feel good again, wham.... the floor gets kicked from under her. Give her a hug from us... hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Aundrea has been off the steroids for one week, which is exactly how > long she lasted the last time we tapered. Anyway, she went to bed > last night just not feeling right and today she wakes up with the sore > throat and swollen lymph nodes. Seems like every flare starts off for > her with the sorethroat. The rash has been more prevalent since being > off the steroids but I was hoping that would resolve on its own. > > Anyway, she went off to school. She was tearful but said that she > wanted to try it for an hour or two. > > I don't want to put her back on the steroids! She has been on the MTX > along with Plaquenil for 5 weeks now. Do you think that the MTX > should start kicking in soon? > > We see the rheumy next Tues. > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Helen, what dose of mtx is Nick on? And what amount of steroids is he on and how long has he been on the steroids? I am just trying to gauge as to what the next step the rheumy may try to take. Drea is on 15mg of mtx and she had one taper of 20mg of pred in Nov and the next taper in Dec starting out at 10mg of pred. I hope your right about the sorethroat just being a " normal " virus. Funny thing is I can't remember the last time Aundrea just had a sorethroat. Must have been before the whole JRA diagnosis. I am impatient and just want the meds to start working right now! It's hard to believe that she has only been sick for a year and a half. Feels like so much longer. Thanks for your well wishes. Glad to hear that Nick was up for extended day today. I hope his day goes well and that he recovers quickly from the cold. Good job on calling the news station. I am excited to see so many people working on JRA awareness. I told Aundrea about the bracelets and she thought that was " Way Cool " ! sonia (drea 9 systemic)-- - In , " hburger64 " <hburger64@h...> wrote: > > -... > UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. it > suxs. I know exactly what you mean about the steriods. > > The MTX does take a long time to work.... I think it was closer to 8 > weeks before we saw a little improvement in when he 1st > started on it. Of course with each flare after that the MTX got > increased up to its max and hes still not off the steriods. > > Im hoping its *just* a sore throat and not the start of a flare. > Nick has a little cold and his voice is sore and horse sounding. Hes > in good spirits though and doesnt have a temp so i packed him off to > school. He even wants to go to extended day today!!! > > I hope Aundrea feels better and makes it though the day. Poor kid, > just when she starts to feel good again, wham.... the floor gets > kicked from under her. > > Give her a hug from us... > > hugs Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > Aundrea has been off the steroids for one week, which is exactly > how > > long she lasted the last time we tapered. Anyway, she went to bed > > last night just not feeling right and today she wakes up with the > sore > > throat and swollen lymph nodes. Seems like every flare starts off > for > > her with the sorethroat. The rash has been more prevalent since > being > > off the steroids but I was hoping that would resolve on its own. > > > > Anyway, she went off to school. She was tearful but said that she > > wanted to try it for an hour or two. > > > > I don't want to put her back on the steroids! She has been on the > MTX > > along with Plaquenil for 5 weeks now. Do you think that the MTX > > should start kicking in soon? > > > > We see the rheumy next Tues. > > > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -.. Nick is on 20mg of MTX...(.8cc subq).. we started at 10 then went to 15 then 17.5 and finally 20. Nick weighs less than 45lbs and the doc does 1mg for each kg the child weighs. She says she knows of other rheumys that go higher but she doesnt. When Nick was started on MTX he was also started on 10mg of pred...( these were both started at the end of Jan 04) the pred was suppose to be tapered as the MTX " kicked in " .. but, we all know how that can go..... everytime we tried to taper the pred Nick flared and the MTX was increased. We are now at 3mg of pred and have been for months.. When we tried to go to 2.5mg of pred Nick flared again (fevers, joint pain ) so back up to 3mg. We added Enbrel Dec 13th and things have been going well. We see the rheumy Feb 1st and hopefully we can try the pred taper again. Im thinking the rheumy might put Aundrea on a lower dose of pred and perhaps up the MTX and do a much slower taper of the prednisone?? let us know how she gets on. hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Helen, > > what dose of mtx is Nick on? And what amount of steroids is he on and > how long has he been on the steroids? > > I am just trying to gauge as to what the next step the rheumy may > try to take. > > Drea is on 15mg of mtx and she had one taper of 20mg of pred in Nov > and the next taper in Dec starting out at 10mg of pred. > > I hope your right about the sorethroat just being a " normal " virus. > Funny thing is I can't remember the last time Aundrea just had a > sorethroat. Must have been before the whole JRA diagnosis. > > I am impatient and just want the meds to start working right now! > It's hard to believe that she has only been sick for a year and a > half. Feels like so much longer. > > Thanks for your well wishes. Glad to hear that Nick was up for > extended day today. I hope his day goes well and that he recovers > quickly from the cold. > > Good job on calling the news station. I am excited to see so many > people working on JRA awareness. I told Aundrea about the bracelets > and she thought that was " Way Cool " ! > > sonia (drea 9 systemic)-- > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > -... > > UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. it > > suxs. I know exactly what you mean about the steriods. > > > > The MTX does take a long time to work.... I think it was closer to 8 > > weeks before we saw a little improvement in when he 1st > > started on it. Of course with each flare after that the MTX got > > increased up to its max and hes still not off the steriods. > > > > Im hoping its *just* a sore throat and not the start of a flare. > > Nick has a little cold and his voice is sore and horse sounding. Hes > > in good spirits though and doesnt have a temp so i packed him off to > > school. He even wants to go to extended day today!!! > > > > I hope Aundrea feels better and makes it though the day. Poor kid, > > just when she starts to feel good again, wham.... the floor gets > > kicked from under her. > > > > Give her a hug from us... > > > > hugs Helen and (7,systemic) > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Aundrea has been off the steroids for one week, which is exactly > > how > > > long she lasted the last time we tapered. Anyway, she went to bed > > > last night just not feeling right and today she wakes up with the > > sore > > > throat and swollen lymph nodes. Seems like every flare starts off > > for > > > her with the sorethroat. The rash has been more prevalent since > > being > > > off the steroids but I was hoping that would resolve on its own. > > > > > > Anyway, she went off to school. She was tearful but said that she > > > wanted to try it for an hour or two. > > > > > > I don't want to put her back on the steroids! She has been on the > > MTX > > > along with Plaquenil for 5 weeks now. Do you think that the MTX > > > should start kicking in soon? > > > > > > We see the rheumy next Tues. > > > > > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -- Was the enbrel started in hopes that you could finally taper off of the pred? Aundrea seemed to do fine when she was between 2-4mg daily of pred. I noticed at 1mg pred the fleeting rash returned along with some stiffness in the morning. Does Nick have any side effects of the prednisone at this low dose? Did you start Nick out on the shots or did that happen as the mtx was increased. Aundrea is pretty freaked out over the possibility of shots. Thanks for the info. I guess I like to have some kind of idea of what to expect next as far as the normal drug progression. It gives me some time to process what might happen before I meet with the rheumy and to formulate some questions. (drea 9 systemic) - In , " hburger64 " <hburger64@h...> wrote: > > -.. > > Nick is on 20mg of MTX...(.8cc subq).. we started at 10 then went to > 15 then 17.5 and finally 20. Nick weighs less than 45lbs and the doc > does 1mg for each kg the child weighs. She says she knows of other > rheumys that go higher but she doesnt. > > When Nick was started on MTX he was also started on 10mg of pred...( > these were both started at the end of Jan 04) the pred was suppose > to be tapered as the MTX " kicked in " .. but, we all know how that can > go..... everytime we tried to taper the pred Nick flared and the MTX > was increased. We are now at 3mg of pred and have been for months.. > When we tried to go to 2.5mg of pred Nick flared again (fevers, > joint pain ) so back up to 3mg. We added Enbrel Dec 13th and things > have been going well. We see the rheumy Feb 1st and hopefully we can > try the pred taper again. > > Im thinking the rheumy might put Aundrea on a lower dose of pred and > perhaps up the MTX and do a much slower taper of the prednisone?? > > let us know how she gets on. > > hugs Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > Helen, > > > > what dose of mtx is Nick on? And what amount of steroids is he on > and > > how long has he been on the steroids? > > > > I am just trying to gauge as to what the next step the rheumy may > > try to take. > > > > Drea is on 15mg of mtx and she had one taper of 20mg of pred in > Nov > > and the next taper in Dec starting out at 10mg of pred. > > > > I hope your right about the sorethroat just being a " normal " > virus. > > Funny thing is I can't remember the last time Aundrea just had a > > sorethroat. Must have been before the whole JRA diagnosis. > > > > I am impatient and just want the meds to start working right now! > > It's hard to believe that she has only been sick for a year and a > > half. Feels like so much longer. > > > > Thanks for your well wishes. Glad to hear that Nick was up for > > extended day today. I hope his day goes well and that he recovers > > quickly from the cold. > > > > Good job on calling the news station. I am excited to see so many > > people working on JRA awareness. I told Aundrea about the > bracelets > > and she thought that was " Way Cool " ! > > > > sonia (drea 9 systemic)-- > > > > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > > > -... > > > UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. it > > > suxs. I know exactly what you mean about the steriods. > > > > > > The MTX does take a long time to work.... I think it was closer > to 8 > > > weeks before we saw a little improvement in when he 1st > > > started on it. Of course with each flare after that the MTX got > > > increased up to its max and hes still not off the steriods. > > > > > > Im hoping its *just* a sore throat and not the start of a flare. > > > Nick has a little cold and his voice is sore and horse sounding. > Hes > > > in good spirits though and doesnt have a temp so i packed him > off to > > > school. He even wants to go to extended day today!!! > > > > > > I hope Aundrea feels better and makes it though the day. Poor > kid, > > > just when she starts to feel good again, wham.... the floor gets > > > kicked from under her. > > > > > > Give her a hug from us... > > > > > > hugs Helen and (7,systemic) > > > > > > -- In , " sonia1md " <sonia1md@y...> > wrote: > > > > > > > > Aundrea has been off the steroids for one week, which is > exactly > > > how > > > > long she lasted the last time we tapered. Anyway, she went to > bed > > > > last night just not feeling right and today she wakes up with > the > > > sore > > > > throat and swollen lymph nodes. Seems like every flare starts > off > > > for > > > > her with the sorethroat. The rash has been more prevalent > since > > > being > > > > off the steroids but I was hoping that would resolve on its > own. > > > > > > > > Anyway, she went off to school. She was tearful but said that > she > > > > wanted to try it for an hour or two. > > > > > > > > I don't want to put her back on the steroids! She has been on > the > > > MTX > > > > along with Plaquenil for 5 weeks now. Do you think that the > MTX > > > > should start kicking in soon? > > > > > > > > We see the rheumy next Tues. > > > > > > > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -Side effects from the pred??? well its kinda hard to know whats caused by the pred and whats normal 7 yr old boy behaviour. Afterb eing on it for just about a year now, its hard to remember a pre- pred Nick. I would say a few mood swings. He can cry pretty quickly over ANYTHING ( this tends to be worse when hes flaring too) Nick started out on the pills at the 10mg... we only did a couple of weeks before we switched to the shots. The not eating for 2 hours as a big deal, and he got bad tummy aches/sickness and the " runs " . We could have added Zofram (sp) but would rather not add ANOTHER med which might or might not have helped when the possiblity of having to switch to shots anyhows if the dose got higher. Nick adapted VERY quickly to the shots. I gave him control, I let him play injecting water into an orange. When it was time for the shot, i let him " push the plunger " . It is scary at 1st but it becomes pretty routine after ahwile. I know i was sick to my stomach giving the 1st few, but i dont bat an eye lid now. Nick can do the whole thing himself too, when he wants. It really is a simple shot that doesnt hurt. At least i know with the shot that hes getting the whole dose and im not left wondering just how much of the dose his body has absorbed. The enbrel was added because he was maxed out on the MTX and the MTX alone was not enough to control him without the pred. Its such a long process, one step at a time until the right combo is found. It can get frustating at times. But it does help to know what is likely to happen before you go to an appt so you can ask all the questions you need to. good luck Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > -- > Was the enbrel started in hopes that you could finally taper off of > the pred? > > Aundrea seemed to do fine when she was between 2-4mg daily of pred. I > noticed at 1mg pred the fleeting rash returned along with some > stiffness in the morning. > > Does Nick have any side effects of the prednisone at this low dose? > > Did you start Nick out on the shots or did that happen as the mtx was > increased. Aundrea is pretty freaked out over the possibility of > shots. > > Thanks for the info. I guess I like to have some kind of idea of what > to expect next as far as the normal drug progression. It gives me some > time to process what might happen before I meet with the rheumy and to > formulate some questions. > > (drea 9 systemic) > > - In , " hburger64 " <hburger64@h...> wrote: > > > > -.. > > > > Nick is on 20mg of MTX...(.8cc subq).. we started at 10 then went to > > 15 then 17.5 and finally 20. Nick weighs less than 45lbs and the doc > > does 1mg for each kg the child weighs. She says she knows of other > > rheumys that go higher but she doesnt. > > > > When Nick was started on MTX he was also started on 10mg of pred...( > > these were both started at the end of Jan 04) the pred was suppose > > to be tapered as the MTX " kicked in " .. but, we all know how that can > > go..... everytime we tried to taper the pred Nick flared and the MTX > > was increased. We are now at 3mg of pred and have been for months.. > > When we tried to go to 2.5mg of pred Nick flared again (fevers, > > joint pain ) so back up to 3mg. We added Enbrel Dec 13th and things > > have been going well. We see the rheumy Feb 1st and hopefully we can > > try the pred taper again. > > > > Im thinking the rheumy might put Aundrea on a lower dose of pred and > > perhaps up the MTX and do a much slower taper of the prednisone?? > > > > let us know how she gets on. > > > > hugs Helen and (7,systemic) > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Helen, > > > > > > what dose of mtx is Nick on? And what amount of steroids is he on > > and > > > how long has he been on the steroids? > > > > > > I am just trying to gauge as to what the next step the rheumy may > > > try to take. > > > > > > Drea is on 15mg of mtx and she had one taper of 20mg of pred in > > Nov > > > and the next taper in Dec starting out at 10mg of pred. > > > > > > I hope your right about the sorethroat just being a " normal " > > virus. > > > Funny thing is I can't remember the last time Aundrea just had a > > > sorethroat. Must have been before the whole JRA diagnosis. > > > > > > I am impatient and just want the meds to start working right now! > > > It's hard to believe that she has only been sick for a year and a > > > half. Feels like so much longer. > > > > > > Thanks for your well wishes. Glad to hear that Nick was up for > > > extended day today. I hope his day goes well and that he recovers > > > quickly from the cold. > > > > > > Good job on calling the news station. I am excited to see so many > > > people working on JRA awareness. I told Aundrea about the > > bracelets > > > and she thought that was " Way Cool " ! > > > > > > sonia (drea 9 systemic)-- > > > > > > > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > > > > > -... > > > > UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. it > > > > suxs. I know exactly what you mean about the steriods. > > > > > > > > The MTX does take a long time to work.... I think it was closer > > to 8 > > > > weeks before we saw a little improvement in when he 1st > > > > started on it. Of course with each flare after that the MTX got > > > > increased up to its max and hes still not off the steriods. > > > > > > > > Im hoping its *just* a sore throat and not the start of a flare. > > > > Nick has a little cold and his voice is sore and horse sounding. > > Hes > > > > in good spirits though and doesnt have a temp so i packed him > > off to > > > > school. He even wants to go to extended day today!!! > > > > > > > > I hope Aundrea feels better and makes it though the day. Poor > > kid, > > > > just when she starts to feel good again, wham.... the floor gets > > > > kicked from under her. > > > > > > > > Give her a hug from us... > > > > > > > > hugs Helen and (7,systemic) > > > > > > > > -- In , " sonia1md " <sonia1md@y...> > > wrote: > > > > > > > > > > Aundrea has been off the steroids for one week, which is > > exactly > > > > how > > > > > long she lasted the last time we tapered. Anyway, she went to > > bed > > > > > last night just not feeling right and today she wakes up with > > the > > > > sore > > > > > throat and swollen lymph nodes. Seems like every flare starts > > off > > > > for > > > > > her with the sorethroat. The rash has been more prevalent > > since > > > > being > > > > > off the steroids but I was hoping that would resolve on its > > own. > > > > > > > > > > Anyway, she went off to school. She was tearful but said that > > she > > > > > wanted to try it for an hour or two. > > > > > > > > > > I don't want to put her back on the steroids! She has been on > > the > > > > MTX > > > > > along with Plaquenil for 5 weeks now. Do you think that the > > MTX > > > > > should start kicking in soon? > > > > > > > > > > We see the rheumy next Tues. > > > > > > > > > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Thanks Helen for all the info. I hope that the enbrel does the trick for Nick and that he can say goodby to the pred. (drea 9 systemic)--- In , " hburger64 " <hburger64@h...> wrote: > > -Side effects from the pred??? well its kinda hard to know whats > caused by the pred and whats normal 7 yr old boy behaviour. Afterb > eing on it for just about a year now, its hard to remember a pre- > pred Nick. I would say a few mood swings. He can cry pretty quickly > over ANYTHING ( this tends to be worse when hes flaring too) > > Nick started out on the pills at the 10mg... we only did a couple of > weeks before we switched to the shots. The not eating for 2 hours as > a big deal, and he got bad tummy aches/sickness and the " runs " . We > could have added Zofram (sp) but would rather not add ANOTHER med > which might or might not have helped when the possiblity of having > to switch to shots anyhows if the dose got higher. Nick adapted VERY > quickly to the shots. I gave him control, I let him play injecting > water into an orange. When it was time for the shot, i let him " push > the plunger " . It is scary at 1st but it becomes pretty routine after > ahwile. I know i was sick to my stomach giving the 1st few, but i > dont bat an eye lid now. Nick can do the whole thing himself too, > when he wants. It really is a simple shot that doesnt hurt. At least > i know with the shot that hes getting the whole dose and im not left > wondering just how much of the dose his body has absorbed. > > The enbrel was added because he was maxed out on the MTX and the MTX > alone was not enough to control him without the pred. > > Its such a long process, one step at a time until the right combo is > found. It can get frustating at times. But it does help to know what > is likely to happen before you go to an appt so you can ask all the > questions you need to. > > good luck > Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > -- > > Was the enbrel started in hopes that you could finally taper off > of > > the pred? > > > > Aundrea seemed to do fine when she was between 2-4mg daily of > pred. I > > noticed at 1mg pred the fleeting rash returned along with some > > stiffness in the morning. > > > > Does Nick have any side effects of the prednisone at this low dose? > > > > Did you start Nick out on the shots or did that happen as the mtx > was > > increased. Aundrea is pretty freaked out over the possibility of > > shots. > > > > Thanks for the info. I guess I like to have some kind of idea of > what > > to expect next as far as the normal drug progression. It gives me > some > > time to process what might happen before I meet with the rheumy > and to > > formulate some questions. > > > > (drea 9 systemic) > > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > > > -.. > > > > > > Nick is on 20mg of MTX...(.8cc subq).. we started at 10 then > went to > > > 15 then 17.5 and finally 20. Nick weighs less than 45lbs and the > doc > > > does 1mg for each kg the child weighs. She says she knows of > other > > > rheumys that go higher but she doesnt. > > > > > > When Nick was started on MTX he was also started on 10mg of > pred...( > > > these were both started at the end of Jan 04) the pred was > suppose > > > to be tapered as the MTX " kicked in " .. but, we all know how that > can > > > go..... everytime we tried to taper the pred Nick flared and the > MTX > > > was increased. We are now at 3mg of pred and have been for > months.. > > > When we tried to go to 2.5mg of pred Nick flared again (fevers, > > > joint pain ) so back up to 3mg. We added Enbrel Dec 13th and > things > > > have been going well. We see the rheumy Feb 1st and hopefully we > can > > > try the pred taper again. > > > > > > Im thinking the rheumy might put Aundrea on a lower dose of pred > and > > > perhaps up the MTX and do a much slower taper of the prednisone?? > > > > > > let us know how she gets on. > > > > > > hugs Helen and (7,systemic) > > > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > > > Helen, > > > > > > > > what dose of mtx is Nick on? And what amount of steroids is > he on > > > and > > > > how long has he been on the steroids? > > > > > > > > I am just trying to gauge as to what the next step the rheumy > may > > > > try to take. > > > > > > > > Drea is on 15mg of mtx and she had one taper of 20mg of pred > in > > > Nov > > > > and the next taper in Dec starting out at 10mg of pred. > > > > > > > > I hope your right about the sorethroat just being a " normal " > > > virus. > > > > Funny thing is I can't remember the last time Aundrea just had > a > > > > sorethroat. Must have been before the whole JRA diagnosis. > > > > > > > > I am impatient and just want the meds to start working right > now! > > > > It's hard to believe that she has only been sick for a year > and a > > > > half. Feels like so much longer. > > > > > > > > Thanks for your well wishes. Glad to hear that Nick was up > for > > > > extended day today. I hope his day goes well and that he > recovers > > > > quickly from the cold. > > > > > > > > Good job on calling the news station. I am excited to see so > many > > > > people working on JRA awareness. I told Aundrea about the > > > bracelets > > > > and she thought that was " Way Cool " ! > > > > > > > > sonia (drea 9 systemic)-- > > > > > > > > > > > > - In , " hburger64 " <hburger64@h...> > wrote: > > > > > > > > > > -... > > > > > UGHH!! is right!!! Im sorry Aundrea is feeling crummy again. > it > > > > > suxs. I know exactly what you mean about the steriods. > > > > > > > > > > The MTX does take a long time to work.... I think it was > closer > > > to 8 > > > > > weeks before we saw a little improvement in when he > 1st > > > > > started on it. Of course with each flare after that the MTX > got > > > > > increased up to its max and hes still not off the steriods. > > > > > > > > > > Im hoping its *just* a sore throat and not the start of a > flare. > > > > > Nick has a little cold and his voice is sore and horse > sounding. > > > Hes > > > > > in good spirits though and doesnt have a temp so i packed > him > > > off to > > > > > school. He even wants to go to extended day today!!! > > > > > > > > > > I hope Aundrea feels better and makes it though the day. > Poor > > > kid, > > > > > just when she starts to feel good again, wham.... the floor > gets > > > > > kicked from under her. > > > > > > > > > > Give her a hug from us... > > > > > > > > > > hugs Helen and (7,systemic) > > > > > > > > > > -- In , " sonia1md " <sonia1md@y...> > > > wrote: > > > > > > > > > > > > Aundrea has been off the steroids for one week, which is > > > exactly > > > > > how > > > > > > long she lasted the last time we tapered. Anyway, she > went to > > > bed > > > > > > last night just not feeling right and today she wakes up > with > > > the > > > > > sore > > > > > > throat and swollen lymph nodes. Seems like every flare > starts > > > off > > > > > for > > > > > > her with the sorethroat. The rash has been more prevalent > > > since > > > > > being > > > > > > off the steroids but I was hoping that would resolve on > its > > > own. > > > > > > > > > > > > Anyway, she went off to school. She was tearful but said > that > > > she > > > > > > wanted to try it for an hour or two. > > > > > > > > > > > > I don't want to put her back on the steroids! She has > been on > > > the > > > > > MTX > > > > > > along with Plaquenil for 5 weeks now. Do you think that > the > > > MTX > > > > > > should start kicking in soon? > > > > > > > > > > > > We see the rheumy next Tues. > > > > > > > > > > > > (Drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
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