Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Tracey, How old is Paxton? My daughter is 3 years old and weighs 26 pounds. She takes 5mg of MTX a week. We haven't noticed any of those awful side effects EXCEPT for sleepy on the day she takes it. She does have awful stomach pain. We can't figure out if it is from Naproxen or MTX. My daughter did improve a lot with MTX. She moves like her playmates. Amy Mother to 3 years old (poly-jra) Mother to Andy 2 years old Mother to Maddie 9 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 Re: Paxton's checkup > From: Amy Fox <foxpro@...> > > Tracey, > > How old is Paxton? My daughter is 3 years old and weighs 26 pounds. She > takes 5mg of MTX a week. We haven't noticed any of those awful side > effects EXCEPT for sleepy on the day she takes it. She does have awful > stomach pain. We can't figure out if it is from Naproxen or MTX. > > My daughter did improve a lot with MTX. She moves like her playmates. > > Amy > Mother to 3 years old (poly-jra) > Mother to Andy 2 years old > Mother to Maddie 9 months old> > >Amy, Paxton is 6 years old. I'm glad to know that there is a chance that we may not have to experience those awful side effects. We will find out this Friday as that will be her first dose. Wish her luck. Tracey > ------------------------------------------------------------------------ > For the fastest, easiest way to backup files and access them from > anywhere. Try @backup Free for 30 days. Click here for a chance > to win a digital camera. > 1/1783/1/_/_/_/951235939/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 Hi Tracey, What an appt!!! I sure hope that Paxton is able to tolerate all these new meds well and that it gets her arthritis under control. Ouch, about that earache! She must have a very high tolerance for pain. The emla cream works really well for a lot of children ... and even some adults I wouldn't worry too much about side effects from MTX. They are rare when given in such low doses as our kids normally take. Maybe sleepiness and some nausea. If that. It does take some time for it to start having an effect, though. Several weeks. I really like their attitude about the steroids. That sounds very positive. I can understand what you're feeling about your Mom's reaction to all the meds. That's how Josh's dad felt, too. Just wait till she's not having any more arthritis symptoms and she's running around, pain-free, again! They'll understand better, then. And after she has a positive response, maybe they'll suggest cutting down on some, anyway. Best to be aggressive early on, to try to prevent permanent joint impairment. Our kids deserve to have the best childhoods they can, even though they have JRA, so if it takes some strong meds to make sure that their quality of life is the best it can be, so be it. Take care, Georgina > " tracey D. Nettles " wrote: > I just wanted to let everyone know how Paxton's apt. went with the > rheumy. yesterday. She had lost weight, which I already knew, and she > had inflammation in her right shoulder and hip. She also has a real > bad ear infection. She has not complained of her ear at all. The > tempanic membrane was bright red, bulging and had pus on it. I don't > see how she could say it did not hurt. We got 5 new RXs. Amoxil > 500mg. 2x day x 10d then 1x day for 3 monthes, prilosec 10mg. 1x day > to hopefully stop the reflux problem and ease some of the abdominal > pain. Methotrexate 5mg once a week., folic acid 1 mg. every day and > prednisone 5 mg. to use only if there is joint swelling. He is trying > not to have to put her on a reg. dose of pred. if at all possible. > Paxton will also cont. to take her viox and sulfasalizine. He > increased the dosage on the sulfasalizine. I feel like I should own > part of the pharmacy. Paxton will also have to go for blood work > every month now because of the methotrexate. She is not real happy > about that, but we did get some emla. I hope all of these new meds > will see us to some better days ahead and prevent any joint > destruction. When I sit and think of all this small child has to go > through, I start to get really depressed. It is so unfair that kids > have to endure so much. We have gone through worse and made it > through, so I know we will make it through this too. Sorry to > ramble. I just needed to vent. I got a lot of flack from my mother > about all the meds Paxton is going to be on. Hard to make her > understand it is to help Paxton not hurt her. Keep us in your > prayers. > Tracey > > ps: any advice on what to expect from the methotrexate would be > appreciated. The PDR list every possible side effect. What have most > of you experienced with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 > > >Amy, > >Paxton is 6 years old. I'm glad to know that there is a chance that we may >not have to experience those awful side effects. We will find out this >Friday as that will be her first dose. Wish her luck. > >Tracey Tracey, Today (Wednesday) is 's day she takes MTX. I give Sammy a big glass of water and hand her one pill at a time. I tell her to swallow it and she does. Then I give her the next pill. They are small pills (like the size of a flouride pill). I bet she'll do wonderful!!! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 Hi ... I am new to this & don't even know if I'm sending this message the right way! My daughter Ashton was diagnosed with polyarticular JRA last April after MANY dr's & visits. It has been a very lonely & confusing time for all of us. We don't know anyone with JRA never even knew what it was before this. Right now she is taking Methotrexate 10 mg a week orally,Folic Acid & Relefan... she has come off the steroids! I have seen alot of discussion about the methotrexate and while I'm not a veteran at this I can tell you what has worked for us. We give her methotrexate on Friday nights at bedtime along with phenergan about 30 minutes prior to the mtx. We do this to help curb the naseau. Now some mornings she still wakes up feeling sick but being a weekend it does not affect her school attendance & we can give her more phenergan if needed( which makes you sleepy). I have found that some weeks the nasuea is worse than others. But I have to say the phenergan has really helped ALOT! Hope maybe my small suggestion can help someone out there. Looking back at this I noticed I didn't mention Ashton's age she is 13. I also have to say I am SO HAPPY to have found this place ..... I'm not alone afterall .... Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 Welcome to the list. Thanks for sharing your way of handling the nausea with mtx. Our daughter n, age 11, was diagnosed 4 months ago with systemic JRA. It looks like she might be put on mtx tomorrow when she visits her rheumy. If she gets sick I will mention phenergan. What is relefan, is is an nsaid? Our daughter weighs about 66 pounds and they want to start her on 25mg of mtx, which we don't agree with. We will only agree to about 10-15 mg. You are most welcome here, and you will gets lots of information. It is one of the only places where people understand what you are going through. Re: Paxton's checkup >From: dkakheath@... > >Hi ... I am new to this & don't even know if I'm sending this message the >right way! My daughter Ashton was diagnosed with polyarticular JRA last April >after MANY dr's & visits. It has been a very lonely & confusing time for all >of us. We don't know anyone with JRA never even knew what it was before this. >Right now she is taking Methotrexate 10 mg a week orally,Folic Acid & >Relefan... she has come off the steroids! I have seen alot of discussion >about the methotrexate and while I'm not a veteran at this I can tell you >what has worked for us. We give her methotrexate on Friday nights at bedtime >along with phenergan about 30 minutes prior to the mtx. We do this to help >curb the naseau. Now some mornings she still wakes up feeling sick but being >a weekend it does not affect her school attendance & we can give her more >phenergan if needed( which makes you sleepy). I have found that some weeks >the nasuea is worse than others. But I have to say the phenergan has really >helped ALOT! Hope maybe my small suggestion can help someone out there. >Looking back at this I noticed I didn't mention Ashton's age she is 13. I >also have to say I am SO HAPPY to have found this place ..... I'm not alone >afterall .... Thanks! > >------------------------------------------------------------------------ >Make history and take part in the first online majority survey. >Voice your opinions on american politics and the next president. >Have your say at >1/1873/1/_/524922/_/951400463/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2000 Report Share Posted February 25, 2000 Hi ! My daughter is 13 & only weighs about 67 pounds. we have been having a hard time getting her weight up. She is on 10 mg mtx as I mentioned & I personally cannot imagine being on a 25 mg dose at that weight,especially with the nasuea she experiences. I hope that your rheum. will work with you maybe a slow increase..who knows? Relefan is an nsaid .. she was on Tolectin (nsaid also) but had too many problems with dosing & school. Hope al goes well with your visit to the dr. Thanks for the welcome...nice to have someplace to go to ...... Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2000 Report Share Posted February 25, 2000 Hi Tracey and Paxton, Hope the first dosage of Methotrexate went without any trouble at all. Remember, don't get discouraged if you don't see any quick, over-night results. It's one of the slower acting, disease-modifying anti-rheumatic drugs(DMARD's) and it does usually take some time to start working. Good Luck! Georgina " tracey D. Nettles " wrote: > > Tracey, > > How old is Paxton? My daughter is 3 years old and weighs 26 pounds. She > > takes 5mg of MTX a week. We haven't noticed any of those awful side > > effects EXCEPT for sleepy on the day she takes it. She does have awful > > stomach pain. We can't figure out if it is from Naproxen or MTX. > > My daughter did improve a lot with MTX. She moves like her playmates. > > Amy > > Mother to 3 years old (poly-jra) > > Mother to Andy 2 years old > > Mother to Maddie 9 months old> > > > >Amy, > > Paxton is 6 years old. I'm glad to know that there is a chance that we may > not have to experience those awful side effects. We will find out this > Friday as that will be her first dose. Wish her luck. > > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2000 Report Share Posted February 25, 2000 Hi Ashton's Mom, Just wanted to say hello and welcome you to our list. Nope, you're definitely not alone! My son will be 11 in April and he's had systemic JRA for almost 5 years. Thank you for sharing your daughter's story and for letting us know what helps with her nausea. I think the nurses mentioned this to us a while ago. I may have to ask about it, as these days the day of MTX isn't as easy as it used to be. Thanks ~Georgina dkakheath@... wrote: > Hi ... I am new to this & don't even know if I'm sending this message the > right way! My daughter Ashton was diagnosed with polyarticular JRA last April > after MANY dr's & visits. It has been a very lonely & confusing time for all > of us. We don't know anyone with JRA never even knew what it was before this. > Right now she is taking Methotrexate 10 mg a week orally,Folic Acid & > Relefan... she has come off the steroids! I have seen alot of discussion > about the methotrexate and while I'm not a veteran at this I can tell you > what has worked for us. We give her methotrexate on Friday nights at bedtime > along with phenergan about 30 minutes prior to the mtx. We do this to help > curb the naseau. Now some mornings she still wakes up feeling sick but being > a weekend it does not affect her school attendance & we can give her more > phenergan if needed( which makes you sleepy). I have found that some weeks > the nasuea is worse than others. But I have to say the phenergan has really > helped ALOT! Hope maybe my small suggestion can help someone out there. > Looking back at this I noticed I didn't mention Ashton's age she is 13. I > also have to say I am SO HAPPY to have found this place ..... I'm not alone > afterall .... Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 Hi , That does sound like a high dose of MTX, to begin treatment with. I think it's more common to begin at a lower dose and then make upward adjustments over time, after noting the child's response through physical exam and blood labs and checking for any unwanted side effects. There was a paper I read once about people having a long-lasting and much greater/better response to Plaquinel (Hydroxychloroquine) when it was started on higher than normally given doses. I haven't seen anything about this with MTX, though. I think you're idea about starting at 10 or 12.5 or even 15mgs is a good one, that should sound reasonable to the doctors. It's easy enough to increase the dose once you find out that she can tolerate it well without adverse affects. Probably safer, too. Take care, georgina WILLIAM PRICE wrote: > Welcome to the list. Thanks for sharing your way of handling the nausea > with mtx. Our daughter n, age 11, was diagnosed 4 months ago with > systemic JRA. It looks like she might be put on mtx tomorrow when she > visits her rheumy. If she gets sick I will mention phenergan. What is > relefan, is is an nsaid? Our daughter weighs about 66 pounds and they want > to start her on 25mg of mtx, which we don't agree with. We will only agree > to about 10-15 mg. You are most welcome here, and you will gets lots of > information. It is one of the only places where people understand what you > are going through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 , Alana, who is 14 (and now after loosing 16 lbs) and 121 lbs (5'6 " ) was started on 15 mg of mtx. At the same time she was started on pred to try and give her immediate relief, she was started on 40 mg pred every other day , is now on 30 every other day and we're hoping Thursday the doc will bring it down to 20. We'll see. She's also on Voltarin 3x day (nsaid) which we are hoping to eliminate soon since it can create all kinds of problems, in my opinion. She has not had any side affects, seems to be much better, was out of school for 2 month and went back this week and really seems much stronger. We're giving her a lot of nutritionals (enzymes, vitamins, minerals, SOD, liver detoxing herbs etc and yes we aren't giving anything that is contraindicated) You may want to ask your doc to try the lower dosages of mtx first to see if it works. Good luck Bonnie Regional Director, PHD Products http://phdproducts.com mailto:bonnie@... 800-863-3403 Re: Paxton's checkup >From: Georgina <gmckin@...> > >Hi , > >That does sound like a high dose of MTX, to begin treatment with. I >think it's more common to begin at a lower dose and then make upward >adjustments over time, after noting the child's response through >physical exam and blood labs and checking for any unwanted side effects. >There was a paper I read once about people having a long-lasting and >much greater/better response to Plaquinel (Hydroxychloroquine) when it >was started on higher than normally given doses. I haven't seen anything >about this with MTX, though. I think you're idea about starting at 10 or >12.5 or even 15mgs is a good one, that should sound reasonable to the >doctors. It's easy enough to increase the dose once you find out that >she can tolerate it well without adverse affects. Probably safer, too. > >Take care, >georgina > >WILLIAM PRICE wrote: > >> Welcome to the list. Thanks for sharing your way of handling the nausea >> with mtx. Our daughter n, age 11, was diagnosed 4 months ago with >> systemic JRA. It looks like she might be put on mtx tomorrow when she >> visits her rheumy. If she gets sick I will mention phenergan. What is >> relefan, is is an nsaid? Our daughter weighs about 66 pounds and they want >> to start her on 25mg of mtx, which we don't agree with. We will only agree >> to about 10-15 mg. You are most welcome here, and you will gets lots of >> information. It is one of the only places where people understand what you >> are going through. > >------------------------------------------------------------------------ >Get what you deserve with NextCard Visa! Rates as low as 2.9% >Intro or 9.9% Fixed APR, online balance transfers, Rewards Points, >no hidden fees, and much more! Get NextCard today and get the >credit youdeserve! Apply now! Get your NextCard Visa at: >1/912/1/_/524922/_/951853658/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
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