Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 well another day at the rhummy.. she still weighs 39lbs (she is going to be 7 on monday) and wears cloths 4-5t.. well she is currently on vioxx and plaguenil.. well she thinks she may benefit from 0.1 of mtx.. i am so scared the side effects really scare me. so she made an appointment with the rhummy in pitts. children's hospital. for a second opinion of the next step of treatment. i am just so worried somthing bad will happen from the mtx.. can anyone please help me out. i want my baby to get better but i also don't wanna hurt her.. she is going to see Dr. Wargula has anyone ever heard of her.. i guess Dr. is booked and jennifer is her partner.. please if any of you could help i would greatly appreciate it.. i have been crying all day.. i feel this thing takeing a terrible tole on me.. thanks for listening.. kellie & (almost 7 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Kellie, My prayers are with you and . I wish I could offer more than that - but Rob has taken none of those meds - and I too worry about what I read about them. The second opinion is a good idea though. Hugs to you. Rob's Mom In a message dated Thu, 6 Sep 2001 10:53:24 AM Eastern Daylight Time, angelslilsis@... writes: > well another day at the rhummy.. she still weighs 39lbs (she is going to be 7 > on monday) and wears cloths 4-5t.. well she is currently on vioxx and > plaguenil.. well she thinks she may benefit from 0.1 of mtx.. i am so scared > the side effects really scare me. so she made an appointment with the rhummy > in pitts. children's hospital. for a second opinion of the next step of > treatment. i am just so worried somthing bad will happen from the mtx.. can > anyone please help me out. i want my baby to get better but i also don't > wanna hurt her.. she is going to see Dr. Wargula has anyone ever > heard of her.. i guess Dr. is booked and jennifer is her partner.. > please if any of you could help i would greatly appreciate it.. i have been > crying all day.. i feel this thing takeing a terrible tole on me.. thanks for > listening.. kellie & (almost 7 poly) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Thanks .. Kellie & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 karen.. thanks alot.. yea i know what you mean about the cloths not being outgrown.. my 3yr ols daughter wears 3t so i think before no time i'll be able to dress them like twins (they always want to lol) she said she doesn't reccomend the pills due to them being so harsh on the stomach and she is only 7 so.. what dose of mtx did they start tabatha on when she was first put on it? did you see a difference? thanks for listening.. kellie & poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Kellie...my heart goes out to you! I think all of us mothers know what you are experiencing. Tabitha has been on mtx. since the age of five and now is sixteen. The only time she had trouble with it was when they prescribed it in the shots. But on the pills she has had on problems. She was okay on taking it orally, also. I never doctored with the new doctors at Pittsburgh childrens hospital. But that was our first hospital she was sent to when we found out Tabitha had this. We had Dr. (who is now teaching) and Dr. Londino(who is now passed away) they both were terrific doctors! They were a godsend to us. I am sure it will be okay at childrens hospital. Being there taught me that no matter how hard everything seems..someone else has it worse. There is an excellent rehabilitation clinic out in Pittsburgh. Tabitha was there alot of summers. She even had her picture on 24 billboards throughout the Pittsburgh area, which advertised for the clinic. The name of it was The Rehabilitation of Pittsburgh. Check into it..it will help in all ways. Kellie, i understand about the weight thing..Tabitha was tiny also, the only thing good about was she didn't grow out of clothes fast. We was happy she finally reached 60 lbs so she was able to start filling out. She started her menstrual cycle at fifteen(which we thought she might have trouble with that) but that is when I started so we are on a normal track as far as female things.She even has PMS..lol. As far as your fears and anxiety, that will ease up alot! It will always be there but not as strong. The horrible things about medicine is that they are able to help in one area and may cause damage in another. We need a magic pill! If your child gets on mtx. and you see side effects or you don't agree with its progress..speak up and say something..it is your right. I don't know if this letter made any sense..But I wanted to let you know from one mother to another..that my heart goes out to you and your family..if ya have any questions, please feel free to ask me. hugs to ya! karen(tabitha..poly jra) From: angelslilsis@... Reply- Subject: 's appt. Date: Thu, 6 Sep 2001 10:41:55 EDT well another day at the rhummy.. she still weighs 39lbs (she is going to be 7 on monday) and wears cloths 4-5t.. well she is currently on vioxx and plaguenil.. well she thinks she may benefit from 0.1 of mtx.. i am so scared the side effects really scare me. so she made an appointment with the rhummy in pitts. children's hospital. for a second opinion of the next step of treatment. i am just so worried somthing bad will happen from the mtx.. can anyone please help me out. i want my baby to get better but i also don't wanna hurt her.. she is going to see Dr. Wargula has anyone ever heard of her.. i guess Dr. is booked and jennifer is her partner.. please if any of you could help i would greatly appreciate it.. i have been crying all day.. i feel this thing takeing a terrible tole on me.. thanks for listening.. kellie & (almost 7 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Kellie, My experience with mtx has been pretty positive. Abbie (12 systemic) has been on mtx for 20 months. She has been taking 25mg sub q since December. Aside from stomach upset with the oral dose, and a metallic taste in her mouth following her injections, we have seen no side effects. She has blood work done every other month to check for liver damage (every month in the beginning). None has been found so far. I pray that she continues to do well on it. Abbie is 5' 1/2 " and 140 lbs. I worry far more about the amount of steroids she has been on for the last year and a half. Quite a few of these kids are on varying amounts of mtx. What I am reading most often is that doctors are prescribing it early and in heavy amounts to prevent joint damage which they are now discovering can happen very early in the disease. I feel that this is why Abbie at this point has no joint damage. I can't and won't tell you what to do. I just want to share our experience. Good luck with your doctor appointments and know that you will make an informed decision in the best interest of your child. God Bless, Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 kellie..to be honest I don't remember the dosage..my mind can't remember way back then..it has a hard time remembering yesterday..lol. She is now on 12.5 mgs. Yes there has been change but no remission as far as that goes. She now gets remicade and with the mtx. she is not in pain like she was. She has had both knees replaced and both of her hips replaced. But her right knee is messed up(the artificial one). It is locked in a bent position but with the help of a lift on her right shoe she is able to walk. We are getting a dynamic brace which we hope will straighten out the knee..if not..another replacement is necessary but we don't want that because it will take length off of her leg. hugs to you and jessica karen(tabs mom) From: angelslilsis@... Reply- Subject: Re: 's appt. Date: Thu, 6 Sep 2001 12:16:35 EDT karen.. thanks alot.. yea i know what you mean about the cloths not being outgrown.. my 3yr ols daughter wears 3t so i think before no time i'll be able to dress them like twins (they always want to lol) she said she doesn't reccomend the pills due to them being so harsh on the stomach and she is only 7 so.. what dose of mtx did they start tabatha on when she was first put on it? did you see a difference? thanks for listening.. kellie & poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 kellie..sorry I forgot to ask in the other letter but where is it you and jessica live at? karen From: angelslilsis@... Reply- Subject: Re: 's appt. Date: Thu, 6 Sep 2001 12:16:35 EDT karen.. thanks alot.. yea i know what you mean about the cloths not being outgrown.. my 3yr ols daughter wears 3t so i think before no time i'll be able to dress them like twins (they always want to lol) she said she doesn't reccomend the pills due to them being so harsh on the stomach and she is only 7 so.. what dose of mtx did they start tabatha on when she was first put on it? did you see a difference? thanks for listening.. kellie & poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hi Kellie, I think they routinely start at a dose of 7.5mgs a week. In our case, I feel that MTX has been the primary med that has done the most for my son's systemic JRA. We didn't get quite the results we were hoping for until we switched from the pills to the injections. His body wasn't absorbing enough of a dose to be therapeutic in pill form. Or so they say. Even so, I feel that that's what has kept his joints in such good shape. His JRA was very severe, stubborn and persistent Without MTX I feel like he'd have worse joint deformity. Never will know for sure, though. Josh has been taking it for 6+ years. The side effects he feels are manageable and in the long run, the benefits seem to far outweigh the drawbacks. I know it's a tough decision to make. Good Luck. Take Care, Georgina angelslilsis@... wrote: > > karen.. thanks alot.. yea i know what you mean about the cloths not being > outgrown.. my 3yr ols daughter wears 3t so i think before no time i'll be > able to dress them like twins (they always want to lol) she said she doesn't > reccomend the pills due to them being so harsh on the stomach and she is only > 7 so.. what dose of mtx did they start tabatha on when she was first put on > it? did you see a difference? thanks for listening.. kellie & poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hi Christy, Is that how Abbie describes it, tasting like metal? says no, it's not like a metal taste to him. He can't really describe it well with words but he says it just doesn't taste right to swallow his saliva and he wants to (ew, gross) ... spit all the time. I hope it's just a stage. Didn't used to feel this particular side effect until after we went up to 15mgs. I don't know why. By the way, Josh gets his blood checked once a month. Take care, Georgina gazelle34@... wrote: > > Kellie, > > My experience with mtx has been pretty positive. Abbie (12 systemic) has been > on mtx for 20 months. She has been taking 25mg sub q since December. Aside > from stomach upset with the oral dose, and a metallic taste in her mouth > following her injections, we have seen no side effects. She has blood work > done every other month to check for liver damage (every month in the > beginning). None has been found so far. I pray that she continues to do well > on it. Abbie is 5' 1/2 " and 140 lbs. I worry far more about the amount of > steroids she has been on for the last year and a half. Quite a few of these > kids are on varying amounts of mtx. What I am reading most often is that > doctors are prescribing it early and in heavy amounts to prevent joint damage > which they are now discovering can happen very early in the disease. I feel > that this is why Abbie at this point has no joint damage. > > I can't and won't tell you what to do. I just want to share our experience. > Good luck with your doctor appointments and know that you will make an > informed decision in the best interest of your child. > > God Bless, > > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hi Kellie, I already responded to another MTX related post ... before seeing this one. I'm sorry. I know how unsettling this can be. I went through the same thing, myself. As many of us have. The list of possible side effects can seem so scary but ... the effects of this illness can be pretty scary, too. Getting a second opinion sounds like a good idea. See if the next doctor feels they can get better control of your daughter's symptoms by adding a DMARD. Maybe reading the posts here from others whose children have been taking MTX for a while will help to ease your mind, too. Remember, those lists of possible drug side effects list just about anything and everything that could POSSIBLY happen. Anyone taking this med is monitored closely for liver, marrow, and white blood cell problems so they will discontinue the med before any severe problems occur. Most times, children with JRA tolerate MTX pretty well. Of course, like everything else, there are exceptions to the rule but it's been around for a very long time and there is lots of published data proving that it often works very successfully to change the natural course of this disease, to relieve inflammation, and to help prevent joint deformity. Take care, Georgina angelslilsis@... wrote: > > well another day at the rhummy.. she still weighs 39lbs (she is going to be 7 > on monday) and wears cloths 4-5t.. well she is currently on vioxx and > plaguenil.. well she thinks she may benefit from 0.1 of mtx.. i am so scared > the side effects really scare me. so she made an appointment with the rhummy > in pitts. children's hospital. for a second opinion of the next step of > treatment. i am just so worried somthing bad will happen from the mtx.. can > anyone please help me out. i want my baby to get better but i also don't > wanna hurt her.. she is going to see Dr. Wargula has anyone ever > heard of her.. i guess Dr. is booked and jennifer is her partner.. > please if any of you could help i would greatly appreciate it.. i have been > crying all day.. i feel this thing takeing a terrible tole on me.. thanks for > listening.. kellie & (almost 7 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 We live about 20 miles from Erie in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 karen, gosh seems like you have had your hands full for a long time.. god bless.. hugs to you and tabs.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 christy, thank you sooooo much for the reassuring words.. i pray that everything goes good too.. it nice knowing i have people here who will listen to me and even give me there advice.. thanks kellie & jessica 7 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 georgia.. thanks.. when then talked to me yesterday about starting the mtx. she said she wanted to start at a low dose of 0.1. the vioxx and plaquenil have done ALOT for her but she thinks that she needs a little boost.. she is only hopeing to have to use it (if we decide) for 6-12 months.. she said she seems 300 times better then she was when i brought her in.. i pray everyday that she gets better and i know the rest of you do to.. hopefully someday there will be a cure.. kellie & jessica 7 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Kellie, My daughter sees Dr. at Children's in Pittsburgh. I asked about Dr. Wargula. Dr. Wargula has been there one month. She is a pediatrician who trained at Pittsburgh and then at Children's Hospital in Cincinnati. Cincy has a large and very good program. We took my daughter to Cincy for a second opinion. It sounds as if Dr. Wargula is very qualified in my opinion. I sent you an email separate from this list as well with more details. I am not sure if you got it or not because that was a few days ago. Good luck, Chris 's appt. well another day at the rhummy.. she still weighs 39lbs (she is going to be 7 on monday) and wears cloths 4-5t.. well she is currently on vioxx and plaguenil.. well she thinks she may benefit from 0.1 of mtx.. i am so scared the side effects really scare me. so she made an appointment with the rhummy in pitts. children's hospital. for a second opinion of the next step of treatment. i am just so worried somthing bad will happen from the mtx.. can anyone please help me out. i want my baby to get better but i also don't wanna hurt her.. she is going to see Dr. Wargula has anyone ever heard of her.. i guess Dr. is booked and jennifer is her partner.. please if any of you could help i would greatly appreciate it.. i have been crying all day.. i feel this thing takeing a terrible tole on me.. thanks for listening.. kellie & (almost 7 poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 chris, thanks alot for letting me know that.. and no i am sorry i didn't get any other e-mail from you.. i would like to hear what you had to say though.. thanks again.. kellie & (7yr old poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Hi, this is Dee Dee (/9 yr with poly -- the 5 foot 9 year old ~ didn't realize that her height was so unusual for kids with JRA). Anyways, I don't have any answers to the questions on the dosage of MTX that Kellie asked, but am curious when kids get MTX in injection form versus pill form. still gets pill form (20mg 1x/week), but at her last appointment the doctor stated that she anticipates increasing the MTX one more time before she gets the meds via injections. Does the doctor give injections or the parent? And how often ~ weekly? is so deathly afraid of needles that I don't know how we are going to handle that when it comes up and with the ever increasing pain, I am guessing that will be soon. When she has blood draws, we put the cream on her arm so she doesn't feel the needle stick (she still cannot even watch it even though she cannot feel it). Also in regard to Kellie's initial e-mail, she mentioned the OT consult. Is OT or PT common for children with JRA? 's left wrist is always tender to the touch and she can hardly flex it. I did have a PT friend look at her for 10 seconds and she felt that OT would be needed as she said she could tell the difference in 's muscle strength in the upper left arm - weaker than the right. Well, that's all for now. Thanks for all your input. Dee Dee and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Kellie, My daughter is 7 also and on .4, and as far i know thats 10mgs of mtx and thats not an overly high dose for this age....Aj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 okay it took me a while to figure out how to answer this but an ml is actually .5 so .4 is 4/5ths of a an ml or cc...........hope thats helps Aj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Kellie, Nikki goes to Children's in Pittsburgh and is on .5ml of methotrexate per week. Mls and ccs are the same thing. .2cc = 5mg, .3cc = 7.5mg, .4cc = 10mg etc. The maximum dose is 1 mg per kg of body weight. Nikki weighs 13.2 kg (around 29.5 pounds) so 12.5mg or .5 cc is the max methotrexate dose she can be on. She is currently on the max. They increased it slowly from .2cc to .5cc. The good news is that her sed rate dropped from 53 to 19. 19 is the lowest it has been in the 2 years she has had JRA. I hope gets the same good results. Chris -----Original Message-----From: angelslilsis@... [mailto:angelslilsis@...]Sent: Tuesday, November 20, 2001 6:11 PM Subject: 's appt. well it is me again.. we just got back from our long 2 hour journey to pitts. childrens hosp. to see jessica's rhummy.. well she said she is looking a little better and thinks she wants to up her mtx injection to 0.4 but thats not till she checks her blood levels.. and we have to go back down there in january for another recheck.. and at that time she also has a ot consult. she is worried about her wrists and hips they seem tight so... is this a high dose of mtx they want to increase it to or is it normal? i just wish this was just a nightmare and it was over.. also she got her 1st flu shot today she said she had to get it and has to get another one in 1 month due to her age. and said that sence i work in a nursing home i should get one too.. ok i guess thats enought rambling for now. thanks for listening.. kellie & jessica 7yr poly For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 dee dee. hi this is kellie jessica started on mtx injections because her Dr. though with as much swelling as she had she wanted to make sure she got all the dose where with the pills some kids do not get it all and plus they said the pills are harder on the stomach. she gets a shot once a week by me (you can take her to the Dr's or have a nurse or someone else give it to her but my sister who is a nurse gave her her first one and the past 4 i have done. they use insulin needles which are smaller than regular needles and it is not given in the muscle only the skin so.. she has done very good with it she might say ouch in the begining but then she says it didn't hurt i think it is that she is just scared like any 7 yr old would be. we have never used anything to numb the area she has done fine. we give the shots on friday because she doesn't have school on sat and if she is not feeling well she can just stay in bed.. well i hope i didn't ramble on too much.. bye bye for now. kellie & 7yr poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 thanks aj..i am so glad i have people to ask questions to that know what i am going threw.. kellie & jessica 7yr poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 chris.. thanks alot.. by the way are you the one who lives in pitts.? kellie & jessica 7yr poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 thanks becky.. kellie & jessica 7 yr poly Quote Link to comment Share on other sites More sharing options...
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