Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Hi , I haven't heard that mtx will increase joint issues, but it sure can make them feel lousy. I would think that the nausea and frequent stools are probably a side effect of the mtx. Okay, I am going to step into it. I have done it before, and I will do it again in the future, I am sure. I would say it is time for a biological. The other medicine prescribed seems to be a band aid approach. She is having inflammation. That inflammation has to be brought under control to alleviate possible damage. Look into the kineret. It seems like more and more doctors are jumping on that for the systemics. I bet if you were going to a ped rheumy, that they would be pushing for a biological. Have you googled any of the biologicals and Valley Fever? n has some wrist damage due to a doctor that wasn't aggressive enough. We no longer go to that doctor. I don't want Aundrea to have wrist damage. Okay, I stepped into it..... (n, 17, systemic) On Dec 5, 2006, at 7:14 AM, sonia1md wrote: > Good news is regarding my son, . He had his 3rd chest x-ray > done and this one showed that he no longer has pneumonia! Took > quite awhile but he has recovered! :-) > > Bad new..Aundrea was home again yesterday and still feeling lousy > last night. We haven't started the new med because of insurance > hassles. The pharmacist said the dose prescribed was showing up as > an overdose and that it wasn't being authorized by insurance. So, > still waiting to hear back from her doc on that. > > This seems strange to me..But Aundrea seems to have increased joint > pain and nause beginning 24 hours after her mtx shot. We give the > mtx on Sat night and like clockwork things start to happen by Sunday > night. I always thought that it was just overdoing things on the > weekend but maybe there is some connection with mtx? Sunday night > we went to see the nativity movie and every 20 minutes we were > headed to the bathroom due to nausea and frequent stools. Her > joints began to ache and fortunately since there was lots of room in > the theater she was able to stretch out across three seats and lay > in my lap. The joint pain persisted yesterday in wrists, fingers, > knees and ankles. > > Anyone know if mtx could actually be increasing these symptoms? > > I will be calling the doc again today to see what we are going to do > about adding the new med. > > The guidance couselor is still working on the possibility of a 1/2 > day program. She is having a harder time doing make-up work right > now due to being so tired and sore wrists...So glad that christmas > break isn't to far away. > > I thought perhaps I should research kirenet..maybe it would have > less potential for respitory side effects and would be a good option > for her. do you use that one along with mtx or just by itself? > > P.S. anyone else on this board know if the ped. rheumy ever arrived > at Children's Hospital???????????? > > (aundrea 11 systemic jra/gerd) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 -, Great news on . Im glad its all behind him. I have to side with here, it's time to think about a biologic. Drea is going though WAY too much to not get out the big guns. I know its a tough and scary step to make, but you have to think of the here and now and Dreas quaility of life. If it were me I would likely go for a 5 day burst of prendisone and move onto something like Kineret. Drea needs to get out of the rutt shes in. I hope I didnt step over the line here, you know I am only saying this because I care. hugs Helen and (9,systemic) -- In , " sonia1md " <sonia1md@...> wrote: > > Good news is regarding my son, . He had his 3rd chest x-ray > done and this one showed that he no longer has pneumonia! Took > quite awhile but he has recovered! :-) > > Bad new..Aundrea was home again yesterday and still feeling lousy > last night. We haven't started the new med because of insurance > hassles. The pharmacist said the dose prescribed was showing up as > an overdose and that it wasn't being authorized by insurance. So, > still waiting to hear back from her doc on that. > > This seems strange to me..But Aundrea seems to have increased joint > pain and nause beginning 24 hours after her mtx shot. We give the > mtx on Sat night and like clockwork things start to happen by Sunday > night. I always thought that it was just overdoing things on the > weekend but maybe there is some connection with mtx? Sunday night > we went to see the nativity movie and every 20 minutes we were > headed to the bathroom due to nausea and frequent stools. Her > joints began to ache and fortunately since there was lots of room in > the theater she was able to stretch out across three seats and lay > in my lap. The joint pain persisted yesterday in wrists, fingers, > knees and ankles. > > Anyone know if mtx could actually be increasing these symptoms? > > I will be calling the doc again today to see what we are going to do > about adding the new med. > > The guidance couselor is still working on the possibility of a 1/2 > day program. She is having a harder time doing make-up work right > now due to being so tired and sore wrists...So glad that christmas > break isn't to far away. > > I thought perhaps I should research kirenet..maybe it would have > less potential for respitory side effects and would be a good option > for her. do you use that one along with mtx or just by itself? > > P.S. anyone else on this board know if the ped. rheumy ever arrived > at Children's Hospital???????????? > > (aundrea 11 systemic jra/gerd) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 , You can " step into it anytime " . I don't get easily offended but I do take your suggestions seriously. I am going to make some calls to see if the ped rheumy has arrived in Az yet. I wouldn't mind getting another opinion and perhaps some films done. The rheumy we have is giving us samples of limbrel. he said it should begin working within 4 or 5 days (he is starting her on the maximum dose)...so hopefully we can get those picked up on Thur from his office and if she isn't improving by next week then we will discuss our other options. I will do some research on kirenet so that I can be prepared. We have an appt. with the rheumy next Friday. My cousin had jra and her wrists are now fused. It weighs heavy on my heart to make the right decisions for Aundrea. The hardest part is that every time we have a dr. appt. she is the smiling kid that looks and feels great...Makes me feel like a liar or paranoid mom to talk about whats going on the majority of the time when she just never seems to be flaring when we have our appt. (which are usually afternoon and her best time of day...also on fridays which is generally when she is doing better for some reason) Thanks again ...I will let you know what develops by next week. sonia (Aundrea 11 systemic jra/gerd)- -- In , Price <bc.price@...> wrote: > > Hi , > > I haven't heard that mtx will increase joint issues, but it sure can > make them feel lousy. I would think that the nausea and frequent > stools are probably a side effect of the mtx. > > Okay, I am going to step into it. I have done it before, and I will > do it again in the future, I am sure. I would say it is time for a > biological. The other medicine prescribed seems to be a band aid > approach. She is having inflammation. That inflammation has to be > brought under control to alleviate possible damage. Look into the > kineret. It seems like more and more doctors are jumping on that for > the systemics. I bet if you were going to a ped rheumy, that they > would be pushing for a biological. Have you googled any of the > biologicals and Valley Fever? > > n has some wrist damage due to a doctor that wasn't aggressive > enough. We no longer go to that doctor. I don't want Aundrea to > have wrist damage. > > Okay, I stepped into it..... (n, 17, systemic) > > > > On Dec 5, 2006, at 7:14 AM, sonia1md wrote: > > > Good news is regarding my son, . He had his 3rd chest x-ray > > done and this one showed that he no longer has pneumonia! Took > > quite awhile but he has recovered! :-) > > > > Bad new..Aundrea was home again yesterday and still feeling lousy > > last night. We haven't started the new med because of insurance > > hassles. The pharmacist said the dose prescribed was showing up as > > an overdose and that it wasn't being authorized by insurance. So, > > still waiting to hear back from her doc on that. > > > > This seems strange to me..But Aundrea seems to have increased joint > > pain and nause beginning 24 hours after her mtx shot. We give the > > mtx on Sat night and like clockwork things start to happen by Sunday > > night. I always thought that it was just overdoing things on the > > weekend but maybe there is some connection with mtx? Sunday night > > we went to see the nativity movie and every 20 minutes we were > > headed to the bathroom due to nausea and frequent stools. Her > > joints began to ache and fortunately since there was lots of room in > > the theater she was able to stretch out across three seats and lay > > in my lap. The joint pain persisted yesterday in wrists, fingers, > > knees and ankles. > > > > Anyone know if mtx could actually be increasing these symptoms? > > > > I will be calling the doc again today to see what we are going to do > > about adding the new med. > > > > The guidance couselor is still working on the possibility of a 1/2 > > day program. She is having a harder time doing make-up work right > > now due to being so tired and sore wrists...So glad that christmas > > break isn't to far away. > > > > I thought perhaps I should research kirenet..maybe it would have > > less potential for respitory side effects and would be a good option > > for her. do you use that one along with mtx or just by itself? > > > > P.S. anyone else on this board know if the ped. rheumy ever arrived > > at Children's Hospital???????????? > > > > (aundrea 11 systemic jra/gerd) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Helen, I know you care and I appreciate your input. It is kind of hard sometimes when I read about Nick or n and others who seem to really have such a far worse case of JRA and therefore biologics seem very warranted. Even her rheumy told me last week that its not typical for RA patients to be flaring so bad they can move their fingers and have such bad knee and ankle pain but days later can feel well enough to run, jump, bike etc.. (which is common for aundrea) Maybe he is right...to be honest I begin to wonder how severe drea's pain is. I dont feel warm joints and I don't see the inflammation but yet I have seen her limp and she will flinch when I touch a joints. It would be easier on me if the doc said you need to do this. Its hard as the parent to feel the weight of all these decisions on yourself and to have to " push " the dr. to treat more aggressively. If he said " you will need to get Drea started on a biologic because these are the things that can happen " ..I think I probably wouldn't hesitate. But if he says " well clinically her labs looks good and she has no loss of range of motion " etc...I just don't know what to say from that point. Do you understand what I am trying to say??? Yet, when Aundrea's jra was controlled last year she missed only one day of school and never complained of any joint pain. I don't know..I am just rambling and so exhausted. I have only had 6 hours of sleep in the last 2 days and am just spent. Thank you so much for being there for me...I wish I could just have one of you guys here to visit with. (aundrea 11 systemic jra/gerd) > > > > Good news is regarding my son, . He had his 3rd chest x-ray > > done and this one showed that he no longer has pneumonia! Took > > quite awhile but he has recovered! :-) > > > > Bad new..Aundrea was home again yesterday and still feeling lousy > > last night. We haven't started the new med because of insurance > > hassles. The pharmacist said the dose prescribed was showing up > as > > an overdose and that it wasn't being authorized by insurance. So, > > still waiting to hear back from her doc on that. > > > > This seems strange to me..But Aundrea seems to have increased > joint > > pain and nause beginning 24 hours after her mtx shot. We give the > > mtx on Sat night and like clockwork things start to happen by > Sunday > > night. I always thought that it was just overdoing things on the > > weekend but maybe there is some connection with mtx? Sunday night > > we went to see the nativity movie and every 20 minutes we were > > headed to the bathroom due to nausea and frequent stools. Her > > joints began to ache and fortunately since there was lots of room > in > > the theater she was able to stretch out across three seats and lay > > in my lap. The joint pain persisted yesterday in wrists, fingers, > > knees and ankles. > > > > Anyone know if mtx could actually be increasing these symptoms? > > > > I will be calling the doc again today to see what we are going to > do > > about adding the new med. > > > > The guidance couselor is still working on the possibility of a 1/2 > > day program. She is having a harder time doing make-up work right > > now due to being so tired and sore wrists...So glad that christmas > > break isn't to far away. > > > > I thought perhaps I should research kirenet..maybe it would have > > less potential for respitory side effects and would be a good > option > > for her. do you use that one along with mtx or just by itself? > > > > P.S. anyone else on this board know if the ped. rheumy ever > arrived > > at Children's Hospital???????????? > > > > (aundrea 11 systemic jra/gerd) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Hi , One of the hardest parts of this disease are the decisions that we make for our children. , we don't mean to be pressuring you. We love you and are only trying to help. I know that there are times that I wish someone would just tell me what to do. All of the doctor appts. and tests can be overwhelming. I don't think the doctors always know. There is no right thing to do at times. There can be several paths to take. If you talked to 2-3 doctors you might get 3 directions to go. For instance, when n was struggling several weeks ago and missing a day of school a week, we were told we could try steroids, we could increase mtx, or go back on the enbrel. The doctor doesn't know which would do the trick. He doesn't know if n would get stuck on the steroids, or if it would be an easy transition off of them. Rest. I know the fatigue that comes from being a parent with a child that is struggling with JRA. It is tiring physically and mentally. Sometimes I wish that I could wake up just one day and not have to worry about n. One day. It would be such a relief. We are considering kineret. It is a gamble. But if it doesn't work, we can always go back to the enbrel. n doesn't want daily shots, but I tell her about the kids that are in remission because of kineret. We have started our 8th year with not one day of remission. Wouldn't it be cool if kineret put n into remission? I know when our kids are flaring, it is the lowest time there is for a mom. Hang in there. On Dec 5, 2006, at 7:20 PM, sonia1md wrote: > , > > You can " step into it anytime " . I don't get easily offended but I > do take your suggestions seriously. > > I am going to make some calls to see if the ped rheumy has arrived > in Az yet. I wouldn't mind getting another opinion and perhaps some > films done. > > The rheumy we have is giving us samples of limbrel. he said it > should begin working within 4 or 5 days (he is starting her on the > maximum dose)...so hopefully we can get those picked up on Thur from > his office and if she isn't improving by next week then we will > discuss our other options. > > I will do some research on kirenet so that I can be prepared. We > have an appt. with the rheumy next Friday. > > My cousin had jra and her wrists are now fused. It weighs heavy on > my heart to make the right decisions for Aundrea. The hardest part > is that every time we have a dr. appt. she is the smiling kid that > looks and feels great...Makes me feel like a liar or paranoid mom to > talk about whats going on the majority of the time when she just > never seems to be flaring when we have our appt. (which are usually > afternoon and her best time of day...also on fridays which is > generally when she is doing better for some reason) > > Thanks again ...I will let you know what develops by next week. > > sonia (Aundrea 11 systemic jra/gerd)- > > -- In , Price <bc.price@...> wrote: > > > > Hi , > > > > I haven't heard that mtx will increase joint issues, but it sure > can > > make them feel lousy. I would think that the nausea and frequent > > stools are probably a side effect of the mtx. > > > > Okay, I am going to step into it. I have done it before, and I > will > > do it again in the future, I am sure. I would say it is time for > a > > biological. The other medicine prescribed seems to be a band aid > > approach. She is having inflammation. That inflammation has to > be > > brought under control to alleviate possible damage. Look into > the > > kineret. It seems like more and more doctors are jumping on that > for > > the systemics. I bet if you were going to a ped rheumy, that > they > > would be pushing for a biological. Have you googled any of the > > biologicals and Valley Fever? > > > > n has some wrist damage due to a doctor that wasn't > aggressive > > enough. We no longer go to that doctor. I don't want Aundrea to > > have wrist damage. > > > > Okay, I stepped into it..... (n, 17, systemic) > > > > > > > > On Dec 5, 2006, at 7:14 AM, sonia1md wrote: > > > > > Good news is regarding my son, . He had his 3rd chest x-ray > > > done and this one showed that he no longer has pneumonia! Took > > > quite awhile but he has recovered! :-) > > > > > > Bad new..Aundrea was home again yesterday and still feeling lousy > > > last night. We haven't started the new med because of insurance > > > hassles. The pharmacist said the dose prescribed was showing up > as > > > an overdose and that it wasn't being authorized by insurance. So, > > > still waiting to hear back from her doc on that. > > > > > > This seems strange to me..But Aundrea seems to have increased > joint > > > pain and nause beginning 24 hours after her mtx shot. We give the > > > mtx on Sat night and like clockwork things start to happen by > Sunday > > > night. I always thought that it was just overdoing things on the > > > weekend but maybe there is some connection with mtx? Sunday night > > > we went to see the nativity movie and every 20 minutes we were > > > headed to the bathroom due to nausea and frequent stools. Her > > > joints began to ache and fortunately since there was lots of > room in > > > the theater she was able to stretch out across three seats and > lay > > > in my lap. The joint pain persisted yesterday in wrists, fingers, > > > knees and ankles. > > > > > > Anyone know if mtx could actually be increasing these symptoms? > > > > > > I will be calling the doc again today to see what we are going > to do > > > about adding the new med. > > > > > > The guidance couselor is still working on the possibility of a > 1/2 > > > day program. She is having a harder time doing make-up work right > > > now due to being so tired and sore wrists...So glad that > christmas > > > break isn't to far away. > > > > > > I thought perhaps I should research kirenet..maybe it would have > > > less potential for respitory side effects and would be a good > option > > > for her. do you use that one along with mtx or just by itself? > > > > > > P.S. anyone else on this board know if the ped. rheumy ever > arrived > > > at Children's Hospital???????????? > > > > > > (aundrea 11 systemic jra/gerd) > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Thanks ...I wish n would get a break and that she could enjoy her highschool years with less pain. I am planning to call the new ped. rheum that has come to az in the morning. He also accepts our insurance plan. :-) I am going to ask about a bone scan and we will give this new med a week and see what happens. thank you for everything...I am glad that you are going to continue to lead your local jra support group..they are very lucky to have you! :-) sonia (aundrea 11 systemic jra/gerd)- -- In , Price <bc.price@...> wrote: > > Hi , > > One of the hardest parts of this disease are the decisions that we > make for our children. > > , we don't mean to be pressuring you. We love you and are only > trying to help. I know that there are times that I wish someone > would just tell me what to do. All of the doctor appts. and tests > can be overwhelming. I don't think the doctors always know. There > is no right thing to do at times. There can be several paths to > take. If you talked to 2-3 doctors you might get 3 directions to > go. For instance, when n was struggling several weeks ago and > missing a day of school a week, we were told we could try steroids, > we could increase mtx, or go back on the enbrel. The doctor doesn't > know which would do the trick. He doesn't know if n would get > stuck on the steroids, or if it would be an easy transition off of them. > > Rest. I know the fatigue that comes from being a parent with a child > that is struggling with JRA. It is tiring physically and mentally. > Sometimes I wish that I could wake up just one day and not have to > worry about n. One day. It would be such a relief. > > We are considering kineret. It is a gamble. But if it doesn't work, > we can always go back to the enbrel. n doesn't want daily > shots, but I tell her about the kids that are in remission because of > kineret. We have started our 8th year with not one day of > remission. Wouldn't it be cool if kineret put n into remission? > > I know when our kids are flaring, it is the lowest time there is for > a mom. Hang in there. > On Dec 5, 2006, at 7:20 PM, sonia1md wrote: > > > , > > > > You can " step into it anytime " . I don't get easily offended but I > > do take your suggestions seriously. > > > > I am going to make some calls to see if the ped rheumy has arrived > > in Az yet. I wouldn't mind getting another opinion and perhaps some > > films done. > > > > The rheumy we have is giving us samples of limbrel. he said it > > should begin working within 4 or 5 days (he is starting her on the > > maximum dose)...so hopefully we can get those picked up on Thur from > > his office and if she isn't improving by next week then we will > > discuss our other options. > > > > I will do some research on kirenet so that I can be prepared. We > > have an appt. with the rheumy next Friday. > > > > My cousin had jra and her wrists are now fused. It weighs heavy on > > my heart to make the right decisions for Aundrea. The hardest part > > is that every time we have a dr. appt. she is the smiling kid that > > looks and feels great...Makes me feel like a liar or paranoid mom to > > talk about whats going on the majority of the time when she just > > never seems to be flaring when we have our appt. (which are usually > > afternoon and her best time of day...also on fridays which is > > generally when she is doing better for some reason) > > > > Thanks again ...I will let you know what develops by next week. > > > > sonia (Aundrea 11 systemic jra/gerd)- > > > > -- In , Price <bc.price@> wrote: > > > > > > Hi , > > > > > > I haven't heard that mtx will increase joint issues, but it sure > > can > > > make them feel lousy. I would think that the nausea and frequent > > > stools are probably a side effect of the mtx. > > > > > > Okay, I am going to step into it. I have done it before, and I > > will > > > do it again in the future, I am sure. I would say it is time for > > a > > > biological. The other medicine prescribed seems to be a band aid > > > approach. She is having inflammation. That inflammation has to > > be > > > brought under control to alleviate possible damage. Look into > > the > > > kineret. It seems like more and more doctors are jumping on that > > for > > > the systemics. I bet if you were going to a ped rheumy, that > > they > > > would be pushing for a biological. Have you googled any of the > > > biologicals and Valley Fever? > > > > > > n has some wrist damage due to a doctor that wasn't > > aggressive > > > enough. We no longer go to that doctor. I don't want Aundrea to > > > have wrist damage. > > > > > > Okay, I stepped into it..... (n, 17, systemic) > > > > > > > > > > > > On Dec 5, 2006, at 7:14 AM, sonia1md wrote: > > > > > > > Good news is regarding my son, . He had his 3rd chest x- ray > > > > done and this one showed that he no longer has pneumonia! Took > > > > quite awhile but he has recovered! :-) > > > > > > > > Bad new..Aundrea was home again yesterday and still feeling lousy > > > > last night. We haven't started the new med because of insurance > > > > hassles. The pharmacist said the dose prescribed was showing up > > as > > > > an overdose and that it wasn't being authorized by insurance. So, > > > > still waiting to hear back from her doc on that. > > > > > > > > This seems strange to me..But Aundrea seems to have increased > > joint > > > > pain and nause beginning 24 hours after her mtx shot. We give the > > > > mtx on Sat night and like clockwork things start to happen by > > Sunday > > > > night. I always thought that it was just overdoing things on the > > > > weekend but maybe there is some connection with mtx? Sunday night > > > > we went to see the nativity movie and every 20 minutes we were > > > > headed to the bathroom due to nausea and frequent stools. Her > > > > joints began to ache and fortunately since there was lots of > > room in > > > > the theater she was able to stretch out across three seats and > > lay > > > > in my lap. The joint pain persisted yesterday in wrists, fingers, > > > > knees and ankles. > > > > > > > > Anyone know if mtx could actually be increasing these symptoms? > > > > > > > > I will be calling the doc again today to see what we are going > > to do > > > > about adding the new med. > > > > > > > > The guidance couselor is still working on the possibility of a > > 1/2 > > > > day program. She is having a harder time doing make-up work right > > > > now due to being so tired and sore wrists...So glad that > > christmas > > > > break isn't to far away. > > > > > > > > I thought perhaps I should research kirenet..maybe it would have > > > > less potential for respitory side effects and would be a good > > option > > > > for her. do you use that one along with mtx or just by itself? > > > > > > > > P.S. anyone else on this board know if the ped. rheumy ever > > arrived > > > > at Children's Hospital???????????? > > > > > > > > (aundrea 11 systemic jra/gerd) > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Hi : I have never talked to you, but your post was very good, but also very sad. I live in NJ, but I am not far from the Philadelphia area. They have been having fires now due to a arson also. It is on our news every night. I think its up to 18 homes now that have been destroyed. They cannot catch this person or persons. Children are afraid to go to bed at night. I hope all goes well where you are, and I hope they catch whoever is doing these fires in both our areas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 Hi Suzzie, That would be so awful. Reminds me of a Nora novel called Blue Smoke. Yes would be very good to catch the mongrels. Regards, from Down Under From: [mailto: ] On Behalf Of suzzienovember Sent: Monday, 9 February 2009 9:23 AM Subject: [ ] Good and Bad News Hi : I have never talked to you, but your post was very good, but also very sad. I live in NJ, but I am not far from the Philadelphia area. They have been having fires now due to a arson also. It is on our news every night. I think its up to 18 homes now that have been destroyed. They cannot catch this person or persons. Children are afraid to go to bed at night. I hope all goes well where you are, and I hope they catch whoever is doing these fires in both our areas. Quote Link to comment Share on other sites More sharing options...
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