Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Hello All, Aundrea had been home all week from school. She has missed nearly 5 weeks of school this year. She had a great Thanksgiving and was very active with friends and family. When reading 's post I was reminded about how important rest is and how Aundrea tends to go 90 to nothing when she feels good which is probably why she tends to crash by Sunday night. Over Thanksgiving she was running, biking, playing all day long. Since Sunday night her joint pain has been nearly constant. Its in more joints than usual. Fingers, wrists, knees, ankles and toes. She doesn't think a joint hurts but when I manipulate it she goes, " oh I guess that one does hurt " . There is no swelling or warmth to touch. She is running a fever and hasn't had fevers since year one of diagnosis. The rash comes and goes but for the most part has been a non-issue. So as many of you know we re-started Mtx in July. She was on 15mg weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and started using phenegan for anti-nausea med. I believe she has had 5 doses on the 20 mg. So, have I been patient enough. Do I need to give this higher dose more time before I rule it out and say its not helping? Should we try increasing to 25mg and see what happens? Is it time to add a different drug? If so which one? I have always thought that since aundrea doesn't have swelling then there can't be any joint destruction taking place...Its more of a pain issue and quality of life issue...Do you think that is true or can destruction take place even if you can't see swelling. They have never done x-rays/mri on Aundrea. Is that a normal procedure to have done and does it give any useful information as far as treatment. Ok, I am full of questions today. Sorry about all of that but I am just not sure where to go from here. I am seriously thinking of looking into homeschooling or seeing what the options are for sending her to school part time. Thanks in advance for any suggestions you may have to offer. (Aundrea 11 systemic jra/gerd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 -, Im so sorry things have not gotten better for Drea, I knew she was still struggling, shes been Im'ing me the past few days so i knew she was off school. To be frank with you, I think you have waited long enough to see if the increase in MTX will help. I think its time to move onto something stronger, either enbrel, remicade or kineret. Missing 5 weeks of school is not acceptable, she should not have to do that, somehting needs to be changed.Have you talked to the school about homebound schooling for her for awhile. Nicks doctor wrote orders for this when Nick was missing so much school in the begining because of the huge fatigue issue he had. They were planning on sending someone to tutor him at home for a few hours a day. It might be something to look into for her. Time to make that call . let us know what they say. hugs Helen and (9,systemic) - In , " sonia1md " <sonia1md@...> wrote: > > Hello All, > > Aundrea had been home all week from school. She has missed nearly 5 > weeks of school this year. > > She had a great Thanksgiving and was very active with friends and > family. When reading 's post I was reminded about how > important rest is and how Aundrea tends to go 90 to nothing when she > feels good which is probably why she tends to crash by Sunday night. > > Over Thanksgiving she was running, biking, playing all day long. > Since Sunday night her joint pain has been nearly constant. Its in > more joints than usual. Fingers, wrists, knees, ankles and toes. > She doesn't think a joint hurts but when I manipulate it she > goes, " oh I guess that one does hurt " . There is no swelling or > warmth to touch. She is running a fever and hasn't had fevers since > year one of diagnosis. The rash comes and goes but for the most > part has been a non-issue. > > So as many of you know we re-started Mtx in July. She was on 15mg > weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and > started using phenegan for anti-nausea med. I believe she has had 5 > doses on the 20 mg. > > So, have I been patient enough. Do I need to give this higher dose > more time before I rule it out and say its not helping? Should we > try increasing to 25mg and see what happens? Is it time to add a > different drug? If so which one? I have always thought that since > aundrea doesn't have swelling then there can't be any joint > destruction taking place...Its more of a pain issue and quality of > life issue...Do you think that is true or can destruction take place > even if you can't see swelling. They have never done x-rays/mri on > Aundrea. Is that a normal procedure to have done and does it give > any useful information as far as treatment. > > Ok, I am full of questions today. Sorry about all of that but I am > just not sure where to go from here. I am seriously thinking of > looking into homeschooling or seeing what the options are for > sending her to school part time. > > Thanks in advance for any suggestions you may have to offer. > > (Aundrea 11 systemic jra/gerd) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 : I am so sorry to hear this. is so right...this is a quality of life issue. You've waited and waited for the MTX to kick in. Aundrea is suffering physically, socially, and in her school work. She could have a bone scan, to see where there is activity in joints. I think, though, that this is already demonstrated whith what you describe. Do you want to put her through this? It involves IV contrast. I would be pushing to move on to another drug, biologic. You've given everything enough time, and she may be having joint damage already. I haven't swelled much, and I have damage. Rob as well has not swelled, but has damage. I'm rambling here, but had to jump in... I hope you can find the right combo and get Aundrea back to her old self again. Let us know what you decide. and Rob 17 Spondy On Wed, 29 Nov 2006 20:09:14 -0000 " sonia1md " <sonia1md@...> writes: Hello All, Aundrea had been home all week from school. She has missed nearly 5 weeks of school this year. She had a great Thanksgiving and was very active with friends and family. When reading 's post I was reminded about how important rest is and how Aundrea tends to go 90 to nothing when she feels good which is probably why she tends to crash by Sunday night. Over Thanksgiving she was running, biking, playing all day long. Since Sunday night her joint pain has been nearly constant. Its in more joints than usual. Fingers, wrists, knees, ankles and toes. She doesn't think a joint hurts but when I manipulate it she goes, " oh I guess that one does hurt " . There is no swelling or warmth to touch. She is running a fever and hasn't had fevers since year one of diagnosis. The rash comes and goes but for the most part has been a non-issue. So as many of you know we re-started Mtx in July. She was on 15mg weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and started using phenegan for anti-nausea med. I believe she has had 5 doses on the 20 mg. So, have I been patient enough. Do I need to give this higher dose more time before I rule it out and say its not helping? Should we try increasing to 25mg and see what happens? Is it time to add a different drug? If so which one? I have always thought that since aundrea doesn't have swelling then there can't be any joint destruction taking place...Its more of a pain issue and quality of life issue...Do you think that is true or can destruction take place even if you can't see swelling. They have never done x-rays/mri on Aundrea. Is that a normal procedure to have done and does it give any useful information as far as treatment. Ok, I am full of questions today. Sorry about all of that but I am just not sure where to go from here. I am seriously thinking of looking into homeschooling or seeing what the options are for sending her to school part time. Thanks in advance for any suggestions you may have to offer. (Aundrea 11 systemic jra/gerd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 HI : You know from the email I sent you earlier that you and Drea have been in my thoughts today. I too think its time to try something more for her. She has been struggling for so long. I really don't have any other advice since we aren't on any of the meds most of the kids on the list are. Please know I am sending you prayers, happy thoughts & cyber hugs!!! Please let me know what you find out. I would think your school district could accommodate home tutors for her. I would check into that first. That way when you do get her pain under control, she can easily get right back into school without a lot of hassle. Beth sonia1md <sonia1md@...> wrote: Hello All, Aundrea had been home all week from school. She has missed nearly 5 weeks of school this year. She had a great Thanksgiving and was very active with friends and family. When reading 's post I was reminded about how important rest is and how Aundrea tends to go 90 to nothing when she feels good which is probably why she tends to crash by Sunday night. Over Thanksgiving she was running, biking, playing all day long. Since Sunday night her joint pain has been nearly constant. Its in more joints than usual. Fingers, wrists, knees, ankles and toes. She doesn't think a joint hurts but when I manipulate it she goes, " oh I guess that one does hurt " . There is no swelling or warmth to touch. She is running a fever and hasn't had fevers since year one of diagnosis. The rash comes and goes but for the most part has been a non-issue. So as many of you know we re-started Mtx in July. She was on 15mg weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and started using phenegan for anti-nausea med. I believe she has had 5 doses on the 20 mg. So, have I been patient enough. Do I need to give this higher dose more time before I rule it out and say its not helping? Should we try increasing to 25mg and see what happens? Is it time to add a different drug? If so which one? I have always thought that since aundrea doesn't have swelling then there can't be any joint destruction taking place...Its more of a pain issue and quality of life issue...Do you think that is true or can destruction take place even if you can't see swelling. They have never done x-rays/mri on Aundrea. Is that a normal procedure to have done and does it give any useful information as far as treatment. Ok, I am full of questions today. Sorry about all of that but I am just not sure where to go from here. I am seriously thinking of looking into homeschooling or seeing what the options are for sending her to school part time. Thanks in advance for any suggestions you may have to offer. (Aundrea 11 systemic jra/gerd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 , I am sorry to hear of Aundrea's struggles. Call your rheumy and let him/her know how things are going. Demand an increase/addition of meds. No, you don't want to go there but she needs to be in better condition than this. Second, because she tends to use up all her energy on the weekend having fun and then have nothing for school etc perhaps you can find a counselor or pain management place for her to work with so she can learn that yes it is good to have fun but to pace herself for school. Homeschooling can help but unfortunately if she wants to go to college she is going to have to learn pacing to let her do so. They do accomodate to an extent but you have to go everyday to make it. I don't mean this to seem harsh just that it will help her to deal with the illness if it continues as she gets older. I hope your rheumy can give you some good suggestions. It seems like they are very slow in increasing meds. We just tend to go full scale moves. With the mtx it was a weekly or biweekly increase. She is big enough now that she shouldn't have to go with such baby steps it seems. e sonia1md <sonia1md@...> wrote: Hello All, Aundrea had been home all week from school. She has missed nearly 5 weeks of school this year. She had a great Thanksgiving and was very active with friends and family. When reading 's post I was reminded about how important rest is and how Aundrea tends to go 90 to nothing when she feels good which is probably why she tends to crash by Sunday night. Over Thanksgiving she was running, biking, playing all day long. Since Sunday night her joint pain has been nearly constant. Its in more joints than usual. Fingers, wrists, knees, ankles and toes. She doesn't think a joint hurts but when I manipulate it she goes, " oh I guess that one does hurt " . There is no swelling or warmth to touch. She is running a fever and hasn't had fevers since year one of diagnosis. The rash comes and goes but for the most part has been a non-issue. So as many of you know we re-started Mtx in July. She was on 15mg weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and started using phenegan for anti-nausea med. I believe she has had 5 doses on the 20 mg. So, have I been patient enough. Do I need to give this higher dose more time before I rule it out and say its not helping? Should we try increasing to 25mg and see what happens? Is it time to add a different drug? If so which one? I have always thought that since aundrea doesn't have swelling then there can't be any joint destruction taking place...Its more of a pain issue and quality of life issue...Do you think that is true or can destruction take place even if you can't see swelling. They have never done x-rays/mri on Aundrea. Is that a normal procedure to have done and does it give any useful information as far as treatment. Ok, I am full of questions today. Sorry about all of that but I am just not sure where to go from here. I am seriously thinking of looking into homeschooling or seeing what the options are for sending her to school part time. Thanks in advance for any suggestions you may have to offer. (Aundrea 11 systemic jra/gerd) --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hello Everyone, Thank you all for your responses. I took time to read thru them and showed them to my husband as we contemplatd what to do next. I spoke with Aundrea's rheumy this morning. He started out with the suggestion of steroids while waiting on mtx to kick in. Prednisone is absolutely my last resort. Aundrea just does terrible with the side effects of mood swings. He then suggested adding ibuprofen. Considering we have tried this twice and each time came away with severe gerd that didn't sound to good to me...she is finally getting over gerd and i am very glad of that. next suggestion was limbrel. You need a dr. script for it but its considered " natural " and is used as a replacement for cox 2 inhibitors. Anyone heard of this before? He orderd 500mg 2 times daily. We will try it for 2 weeks. He mentioned enbrel. He is concerned about the increased risk it poses for valley fever, tb, respitory infections and bacterial infections. I met with the school counselor today..She said that if aundrea's dr. wrote a script saying it was likely that she would miss 3 months of school during the year then she would qualify for a home bound tutor. She has already missed 5 weeks. The problem is that there is only 1 home bound teacher for the entire district so its doubtful we would get much help there. Another option we are looking into is sending her for 1/2 days. She could go at 11 and be done by 2 and just attend core classes but still be considered full-time and get credit. On a bright note Aundrea is feeling really good today. Last night her fingers were so stiff she couldn't even bend them and this morning she is doing awesome. We have had a cold front come thru so perhaps that intesified her problems. I will let ya all know how things go with limbrel. and if anyone else has experience with it let me know what you thought of it. Thanks again for everything. You guys mean so much to me and your suggestions are very valuable to me. Blessings, sonia (aundrea 11 systemic jra/gerd)- In , " sonia1md " <sonia1md@...> wrote: > > Hello All, > > Aundrea had been home all week from school. She has missed nearly 5 > weeks of school this year. > > She had a great Thanksgiving and was very active with friends and > family. When reading 's post I was reminded about how > important rest is and how Aundrea tends to go 90 to nothing when she > feels good which is probably why she tends to crash by Sunday night. > > Over Thanksgiving she was running, biking, playing all day long. > Since Sunday night her joint pain has been nearly constant. Its in > more joints than usual. Fingers, wrists, knees, ankles and toes. > She doesn't think a joint hurts but when I manipulate it she > goes, " oh I guess that one does hurt " . There is no swelling or > warmth to touch. She is running a fever and hasn't had fevers since > year one of diagnosis. The rash comes and goes but for the most > part has been a non-issue. > > So as many of you know we re-started Mtx in July. She was on 15mg > weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and > started using phenegan for anti-nausea med. I believe she has had 5 > doses on the 20 mg. > > So, have I been patient enough. Do I need to give this higher dose > more time before I rule it out and say its not helping? Should we > try increasing to 25mg and see what happens? Is it time to add a > different drug? If so which one? I have always thought that since > aundrea doesn't have swelling then there can't be any joint > destruction taking place...Its more of a pain issue and quality of > life issue...Do you think that is true or can destruction take place > even if you can't see swelling. They have never done x-rays/mri on > Aundrea. Is that a normal procedure to have done and does it give > any useful information as far as treatment. > > Ok, I am full of questions today. Sorry about all of that but I am > just not sure where to go from here. I am seriously thinking of > looking into homeschooling or seeing what the options are for > sending her to school part time. > > Thanks in advance for any suggestions you may have to offer. > > (Aundrea 11 systemic jra/gerd) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2006 Report Share Posted December 2, 2006 Hi , I haven't been around much lately as I have been busy with a new job. I am so sorry that Aundrea is still having problems. I think the last time I checked in things were looking up for her. I really hope the limbrel helps her a great deal. My son is in fourth grade and I know how hard it is to miss even at that age. was on Enbrel for almost two years. She was fairly healthy, except in the fall when cold season started she had constant sinus infections from fall to spring. However, it was only on Enbrel that she enjoyed a 10 month medicated remission free of all jra symptoms. She is on Humira now (and has been since February) and has not had any sinus infections at all. She has had strep a couple of times that cleared up with Amoxicillan. Hopefully the limbrel will help and Aundrea will feel better enough to go to school. Take care. Sophie 's mom, age 6, systemic jra > > > > Hello All, > > > > Aundrea had been home all week from school. She has missed nearly > 5 > > weeks of school this year. > > > > She had a great Thanksgiving and was very active with friends and > > family. When reading 's post I was reminded about how > > important rest is and how Aundrea tends to go 90 to nothing when > she > > feels good which is probably why she tends to crash by Sunday > night. > > > > Over Thanksgiving she was running, biking, playing all day long. > > Since Sunday night her joint pain has been nearly constant. Its > in > > more joints than usual. Fingers, wrists, knees, ankles and toes. > > She doesn't think a joint hurts but when I manipulate it she > > goes, " oh I guess that one does hurt " . There is no swelling or > > warmth to touch. She is running a fever and hasn't had fevers > since > > year one of diagnosis. The rash comes and goes but for the most > > part has been a non-issue. > > > > So as many of you know we re-started Mtx in July. She was on 15mg > > weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and > > started using phenegan for anti-nausea med. I believe she has had > 5 > > doses on the 20 mg. > > > > So, have I been patient enough. Do I need to give this higher > dose > > more time before I rule it out and say its not helping? Should we > > try increasing to 25mg and see what happens? Is it time to add a > > different drug? If so which one? I have always thought that > since > > aundrea doesn't have swelling then there can't be any joint > > destruction taking place...Its more of a pain issue and quality of > > life issue...Do you think that is true or can destruction take > place > > even if you can't see swelling. They have never done x-rays/mri > on > > Aundrea. Is that a normal procedure to have done and does it give > > any useful information as far as treatment. > > > > Ok, I am full of questions today. Sorry about all of that but I > am > > just not sure where to go from here. I am seriously thinking of > > looking into homeschooling or seeing what the options are for > > sending her to school part time. > > > > Thanks in advance for any suggestions you may have to offer. > > > > (Aundrea 11 systemic jra/gerd) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 Hi Sophie, I am glad to hear that is doing well with Humira. It seems to be a promsing drug for many. I hope that limbrel will do the trick for drea. I definately think its worth attempting. If it doesn't work then we may have to discuss the option again of enbrel. In az. there is a risk of valley fever which is a problem in Arizona. My cuz is on enbrel for JRA and they have done testing on her to see if she has valley fever. She had to go off enbrel which has really caused her to have a major flare. People with compromsied immune systems can struggle for years or longer with side effects of valley fever among which are lung infections, body aches, and extreme fatigue. I think when we lived in Illinois I would have been more inclined to try enbrel sooner. Here in Az I wonder if a different biologic might be a better choice. I guess I would like to know the stats on how many enbrel users have contracted valley fever. Well, anyway we will see how things go with limbrel and maybe that will be all she needs. :-) Thanks for checking in..it was good to hear from you! (Aundrea 11 systemic jra/gerd) > > > > > > Hello All, > > > > > > Aundrea had been home all week from school. She has missed > nearly > > 5 > > > weeks of school this year. > > > > > > She had a great Thanksgiving and was very active with friends > and > > > family. When reading 's post I was reminded about how > > > important rest is and how Aundrea tends to go 90 to nothing when > > she > > > feels good which is probably why she tends to crash by Sunday > > night. > > > > > > Over Thanksgiving she was running, biking, playing all day > long. > > > Since Sunday night her joint pain has been nearly constant. Its > > in > > > more joints than usual. Fingers, wrists, knees, ankles and > toes. > > > She doesn't think a joint hurts but when I manipulate it she > > > goes, " oh I guess that one does hurt " . There is no swelling or > > > warmth to touch. She is running a fever and hasn't had fevers > > since > > > year one of diagnosis. The rash comes and goes but for the most > > > part has been a non-issue. > > > > > > So as many of you know we re-started Mtx in July. She was on > 15mg > > > weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and > > > started using phenegan for anti-nausea med. I believe she has > had > > 5 > > > doses on the 20 mg. > > > > > > So, have I been patient enough. Do I need to give this higher > > dose > > > more time before I rule it out and say its not helping? Should > we > > > try increasing to 25mg and see what happens? Is it time to add > a > > > different drug? If so which one? I have always thought that > > since > > > aundrea doesn't have swelling then there can't be any joint > > > destruction taking place...Its more of a pain issue and quality > of > > > life issue...Do you think that is true or can destruction take > > place > > > even if you can't see swelling. They have never done x- rays/mri > > on > > > Aundrea. Is that a normal procedure to have done and does it > give > > > any useful information as far as treatment. > > > > > > Ok, I am full of questions today. Sorry about all of that but I > > am > > > just not sure where to go from here. I am seriously thinking of > > > looking into homeschooling or seeing what the options are for > > > sending her to school part time. > > > > > > Thanks in advance for any suggestions you may have to offer. > > > > > > (Aundrea 11 systemic jra/gerd) > > > > > > Quote Link to comment Share on other sites More sharing options...
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