Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 's Meds I've decided to try methotrexate by injection along with the sulfa drug used for arthritis rather than put on enbrel or remicade at this time. I feel that she may not be getting the full benefit of her dose of mtx when she takes it by mouth. Her rheumy doesn't seem to think it's going to work for her but I want to give it a shot. I have heard the mtx by injection is much more beneficial than by mouth. I also want to try a non-invasive acupressure therapy to see if this may help alleviate her symptoms. As I've stated before, I'm very concerned with the long term side effects of these new arthritis drugs. They just haven't been around long enough for me to feel comforatble giving them to my 7 year old. if anyone out there has gone from oral mtx to a mtx injection and seen better results, please let me know. Does anyone know about this sulfa drug ( I believe it's asulphazine (probably not correct spelling)? I'd be interested to hear your advice/support. I pray and hope for all your children. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 In a message dated 3/24/00 8:22:45 PM Eastern Standard Time, fkiszka@... writes: << She has been on prednisone for only three months (2 months on alternate day therapy) and has gained 7 pounds, which on a 7 year old is quite a lot of weight. She looks totally different. Our new rheumy told us to make sure she gets this med before 7 AM. We never knew that. We did give in the AM but not that early. >> Any idea why it has to be that early, i have never heard of that. I often give holly hers right before bed, so she sleeps through alot of it and seems to wake less stiff and sore AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Hi Everyone!!! It's been a neverending rollercoaster ride for and her father and I. If you recall, we have really been having some trouble with new medications that have been recommended for . Mainly enbrel or remicade. We have now found a new pediatric rheumatologist whom we feel is excellent. She has found things out about that no other doctor saw or cared to see. First of all, 's left leg is shorter than the right by 1/4 of an inch. We need to get a heel insert. She has been on prednisone for only three months (2 months on alternate day therapy) and has gained 7 pounds, which on a 7 year old is quite a lot of weight. She looks totally different. Our new rheumy told us to make sure she gets this med before 7 AM. We never knew that. We did give in the AM but not that early. She will be taking her mtx by injection along with the two additional shot of enbrel. (We really have to give this medication a try.) Her arthritis is so severe that she needs immediate aggressive therapy. If you are familiar with my feelings about this drug, you all know that this hasn't been an easy decision for my husband and I. Basically, we have tried all the options and there is no where else to go. Nothing so far has helped. I keep hoping and praying that before I start giving her Enbrel, she will go into complete remission just as quickly as she got this horrible, awful disease!!!! I am very frightened but more frightened of what lies ahead for her if I don't give her this medication. I will keep you all posted. As I've said before, I hope and pray for all of your children and you. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Hi Ruth, It sounds like you did the right thing, by looking for and finding a new doctor for to see. I'm glad they were able to give you some good information. I've heard that it's somewhat common for kids with JRA to have those leg length discrepancies. Hopefully she'll be more comfortable with the heel insert you mentioned. What is the dose of steroid takes? It can cause bloating and weight gain, like you said. Josh gets the very rounded cheeks and tummy on higher doses. In the past, when he got down to around 10mgs/12.5mgs, his appearance changed back to the way he used to look, pre-steroids. He still looks Cushingoid right now, as he's at 17.5mgs. Cortisol, very similar to the corticosteroids we use, is produced naturally in the body. As far as I know, it's released (by the pituitary glands?) in the very early am hours ... and that's why they suggest giving prednisone around the same time, very early. Also, it can interfere with sleep. Though I have heard of a few kids who take a staggered dose, including one before bedtime. Good Luck, with the combination of MTX and Enbrel. I hope katie has a great response. Aloha, Georgina > Kiszka wrote: > Hi Everyone!!! > > It's been a neverending rollercoaster ride for and her father > and I. If you recall, we have really been having some trouble with > new medications that have been recommended for . Mainly enbrel > or remicade. > > We have now found a new pediatric rheumatologist whom we feel is > excellent. She has found things out about that no other doctor > saw or cared to see. First of all, 's left leg is shorter than > the right by 1/4 of an inch. We need to get a heel insert. > > She has been on prednisone for only three months (2 months on > alternate day therapy) and has gained 7 pounds, which on a 7 year old > is quite a lot of weight. She looks totally different. Our new > rheumy told us to make sure she gets this med before 7 AM. We never > knew that. We did give in the AM but not that early. > > She will be taking her mtx by injection along with the two additional > shot of enbrel. (We really have to give this medication a try.) Her > arthritis is so severe that she needs immediate aggressive therapy. > If you are familiar with my feelings about this drug, you all know > that this hasn't been an easy decision for my husband and I. > Basically, we have tried all the options and there is no where else to > go. Nothing so far has helped. > > I keep hoping and praying that before I start giving her Enbrel, she > will go into complete remission just as quickly as she got this > horrible, awful disease!!!! I am very frightened but more frightened > of what lies ahead for her if I don't give her this medication. > > I will keep you all posted. > > As I've said before, I hope and pray for all of your children and you. > > Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Sorry guys, but I'm taking a breather for a few days...this weekend has been the absolute worst since 's dx of ADHD......called doc this afternoon and he said to discontinue the Cylert! Just on Risperdal for a few days until he decides which med to try next......probably Adderral again, since it worked a few months ago....here we go again...... had a total meltdown at pediatrician's office......I had to leave work because the school nurse THOUGHT he had pink eye! They don't understand that Down's kids sometimes have overactive tear ducts that tear up a lot....I TOLD them this the last time this happened.....so I missed work and had to stay home with him when he wasn't sick! 's been going to bed after 10:00 p.m. each night and getting up at the crack of dawn....back to where we were! Please send prayers that we get this figured out......Leah's been nagging me to go on a trip to Kennedy Krieger......looks better and better every day! Take care all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 In a message dated 11/6/00 6:28:35 PM Central Standard Time, Ltb3105@... writes: << Please send prayers that we get this figured out......Leah's been nagging me to go on a trip to Kennedy Krieger......looks better and better every day! >> , prayers going out for you and . Sorry you're having such a difficult time. Gee, do you think we could get a group discount from Dr. Capone? I'm tempted to make the trip too! Hang in there, Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 laura, hugs and whatever that crazy drink is that you have at on the border coming your virtual way... i hope sean is just going through a very SHORT spirt of noncompliance drive his mom nuts behavior....... hang in there and i hope it gets better. . i can identify with the no sleep all night...... ashton sings praises and halleleujahs to herself and whomever upstairs is watching......heheh take care and i hope it gets better. leah ps how many drugs is sean on, just the risperdal?????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 many prayers and a bottle of nodoz for you, i know exactly how you feel hun, they take nathan's temp constantly it seems and try to send him home at least once a week anmore with a 99.? temp and no other symptoms, the yjust dont want to put up with him i think, and he is fine all day at home no temp etc, just being a butt, and not letting me sleep after working all night and having to work again tonight. shawna. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 shawna, i sure as hell hope you get some sleep soon........ its rough as hell working nights and getting no sleep.......been that route before and crashed.......hehe hang in there and prayers coming your way too........elah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 hi all, I hope that everyone gets sleep, some of you might be staying up late to watch the election. I pray for everyone thoughout this week, and though whatever situation/problem they be strugle with though out this week. sincerely, >From: vainclusion4all@... >Reply-egroups ><egroups> >Subject: Re: Re: 's Meds >Date: Tue, 07 Nov 2000 23:01:07 EST > >shawna, >i sure as hell hope you get some sleep soon........ its rough as hell >working >nights and getting no sleep.......been that route before and >crashed.......hehe hang in there and prayers coming your way >too........elah _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
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