Starting methotrexate tomorrow all

[Guest guest]

Hi everyone, I'm just getting a bit nervous because Riley is starting her mtx tomorrow. Does anybody have any tips or info to share. I have all of the pamphlets and all that stuff, but I would love some personal feedback. She is to start in the a.m. with 10 mg. I know a lot experience nausea at first. Is it important that she have a full stomach? Any tried and true tips from any of you expert jra Mom's and Dad's? I really appreciate the info that you all share. Take care,

Ellie and Riley 4 poly

[Guest guest]

Hi Lynn, Riley's rheumy said to give it to her in the morning for the first dose so we can watch her reaction. The following week we're to give it at night. He gave us folic acid (leucovorin calcium) 5 mg. But we are only supposed to give her 1 tablet every week 24 hours after the MTX. Does that sound right?

Thanks a bunch,

Ellie

[Guest guest]

Hi Ellie:

Mickey's doctors told us to give her the mtx late in the evening, in the hope that she would sleep through the nausea. I take it Riley is getting the pill/oral form of mtx? Did they also tell you to make sure she gets a tablet of folic acid (1mg) every day? This apparently helps with liver toxicity and also helps lessen the chances of her developing mouth sores. Mickey got very stomach sick from the oral mtx (she gets it by injection now) and I found it helped to give her a children's cherry gravol with it. It made her sleepy, but as we gave it to her at night, that was no problem.

You have to be patient with mtx, because it can take up to a full 3 months for it to become effective. I can't remember if Riley is on prednisone, but after about 6 weeks on mtx, Mickey was able to finally start tapering her dose of prednisone, and went over the next few months from 16-20mg of pred a day, to less than 10. Which hadn't happened in 2 years. So its not an overnight miracle drug, but on it Mickey was finally able to go to low-dose prednisone, and more or less (except for a couple nasty flares) stay there. Which isn't as great as NO prednisone, but is at least less worrisome.

Lynn

From: skyley8@...

Reply-

Date: Fri, 31 May 2002 19:34:19 EDT

Subject: Starting methotrexate tomorrow all

Hi everyone,

I'm just getting a bit nervous because Riley is starting her mtx tomorrow. Does anybody have any tips or info to share. I have all of the pamphlets and all that stuff, but I would love some personal feedback. She is to start in the a.m. with 10 mg. I know a lot experience nausea at first. Is it important that she have a full stomach? Any tried and true tips from any of you expert jra Mom's and Dad's? I really appreciate the info that you all share. Take care,

Ellie and Riley 4 poly

[Guest guest]

Thanks Lynn, I like the name Elianna too, unfortunately I rebelled against it so hard as a kid, that I just sort of became Eli, or Ellie. You however may call me whatever you prefer! Thanks for the advice, I'll let you know how it goes tomorrow. Hugs,

Elianna! and Riley

[Guest guest]

Hi Eli (I love your full name, Eliana, its a beautiful name - makes me think of the Elven Princesses and Queen in the Lord of the Rings trilogy, they had that kind of melodic name!)

Anyway! Most people on this list that I recall posted that they give their kids the folic acid every day EXCEPT the day of or day after the mtx. But our docs said every day. I've never had a good explanation for the difference, I suspect different docs just have different protocols. None of our kids seem to have some to any harm, either way. One did have problems with mouth sores for a while, but I can't remember who. A 5 mg dose once/week would be close to equivalent with 1mg/day, so I guess it may work. Not sure how long it stays in the body. I think water soluble vitamins like C are excreted constantly and need to be replenished, while oil/fat solubles like Vit. A take longer to be processed and can build up to toxic amounts if people go on some of those fancy diets that call for mega amounts. Not sure which folic acid is, it may be worth a call to your doc.

Makes sense to give the first dose early in the day to monitor side effects. Very safe and practical. I hope it goes well for her. Mickey felt really lousy on the oral mtx, and would sleep practically the entire weekend when she was getting it that way. Much as we HATE the injections, the side effects are far less.

Good luck,

Lynn

From: skyley8@...

Reply-

Date: Fri, 31 May 2002 20:44:46 EDT

Subject: Re: Starting methotrexate tomorrow all

Hi Lynn,

Riley's rheumy said to give it to her in the morning for the first dose so we can watch her reaction. The following week we're to give it at night. He gave us folic acid (leucovorin calcium) 5 mg. But we are only supposed to give her 1 tablet every week 24 hours after the MTX. Does that sound right?

Thanks a bunch,

Ellie

[Guest guest]

now shes trying to suck up to ya Ellie Jona and na and I am sure na feels the same way about my opinions

jona and Bri-means we or us

Lynn Young <llyoung@...> wrote: Hi Eli (I love your full name, Eliana, its a beautiful name - makes me think of the Elven Princesses and Queen in the Lord of the Rings trilogy, they had that kind of melodic name!)Anyway! Most people on this list that I recall posted that they give their kids the folic acid every day EXCEPT the day of or day after the mtx. But our docs said every day. I've never had a good explanation for the difference, I suspect different docs just have different protocols. None of our kids seem to have some to any harm, either way. One did have problems with mouth sores for a while, but I can't remember who. A 5 mg dose once/week would be close to equivalent with 1mg/day, so I guess it may work. Not sure how long it stays in the body. I think water soluble vitamins like C are excreted constantly and need to be replenished, while oil/fat solubles like Vit. A take longer to be processed and can build up to toxic amounts if people go on some of those fancy diets that call for mega amounts. Not sure which folic acid is, it may be worth a call to your doc. Makes sense to give the first dose early in the day to monitor side effects. Very safe and practical. I hope it goes well for her. Mickey felt really lousy on the oral mtx, and would sleep practically the entire weekend when she was getting it that way. Much as we HATE the injections, the side effects are far less.Good luck,Lynn

From: skyley8@...Reply- Date: Fri, 31 May 2002 20:44:46 EDT Subject: Re: Starting methotrexate tomorrow all

Hi Lynn, Riley's rheumy said to give it to her in the morning for the first dose so we can watch her reaction. The following week we're to give it at night. He gave us folic acid (leucovorin calcium) 5 mg. But we are only supposed to give her 1 tablet every week 24 hours after the MTX. Does that sound right? Thanks a bunch, Ellie

[Guest guest]

Elllie/Eli/Eliana:

However you use it, a beautiful name...

Anyway, just wishing you the best and I'll be praying for Riley today...and I'll be praying for all kids with JRA always...

and Rob 13 jas

[Guest guest]

You're very sweet , I appreciate your prayers and warm thoughts. We started this morning about 2 hours ago, so far so good. Big hugs to you and Rob.

Eli, Ellie, Elianna and Riley 4 poly

(I will have to choose one, Maybe another on line poll? lolol!)

[Guest guest]

Ellie,

My daughter has been taking methotrexate for 7+ years now. We also give the leucovorin once a week, 24 hours after methotrexate. that seems to be the standard when leucovorin is used in place of daily folic acid.

Liz

Re: Starting methotrexate tomorrow all

Hi Lynn, Riley's rheumy said to give it to her in the morning for the first dose so we can watch her reaction. The following week we're to give it at night. He gave us folic acid (leucovorin calcium) 5 mg. But we are only supposed to give her 1 tablet every week 24 hours after the MTX. Does that sound right? Thanks a bunch, Ellie

[Guest guest]

Hi Eli:

I hope all is going well with Riley. When Mickey is feeling badly, she loves it when I read stories to her. It helps take her mind off of feeling lousy and it reassures her to have me close by at the same time.

Lots of ICY cold water also seems to help. I sometimes put ice cubes and blueberries (and a bit of sugar) in the blender, and make kind of a homemade " slushy " drink for her. The blueberries are full of healthy vitamins and antioxidants that I read somewhere are particularly helpful with inflammatory diseases, and she loves them, too. It could be any kind of fruit Riley likes. Sometimes with the nausea she doesn't feel like eating, but I feel better knowing she's getting a bit of good stuff into her with the slushy.

Lynn

From: skyley8@...

Reply-

Date: Sat, 1 Jun 2002 12:58:37 EDT

Subject: Re: Starting methotrexate tomorrow all

You're very sweet , I appreciate your prayers and warm thoughts. We started this morning about 2 hours ago, so far so good. Big hugs to you and Rob.

Eli, Ellie, Elianna and Riley 4 poly

(I will have to choose one, Maybe another on line poll? lolol!)

[Guest guest]

Ellie-

The tip that I got from others which I used was to give her dose before

she goes to bed, and on the weekend, so if there's any nausea or tiredness,

she can sleep it off. I understand you're starting Sunday a.m., so she'll

still have all day Sunday. really hasn't had any trouble except a

little tiredness when she first started and when the dosage was increased.

Good luck. Let us know how it goes. You'll be surprised at how " uneventful "

it ends up being.

Diane (, 3, pauci)

[Guest guest]

Wow, with all of this controversy I forgot to update you all on Riley! Which just goes to show, you're right about it being fairly uneventful! She actually started this morning and aside from being a bit tired, she has been fine. Playing swimming etc... She ate lunch, hasn't mentioned any nausea. Maybe a bit moody, but that's about it. I'm forcing tons of juice on her. Thanks everyone for helping me through this step. It feels so good to actually be doing something! Hugs to everyone

Ellie and Riley

[Guest guest]

Hi Ellie,

I concur with Lynn about the mtx dosing in the evening. When Abbie was on the oral, it worked best to dose at bedtime.

Christy (Abbie, 12 systemic)

[Guest guest]

Our doctor has said he same thing--pm dosing on the weekend. She has not ever complained of nausea though. So either its working this way or she is fortunate. As the old saying goes, don't fix what aint broken. So we'll keep it that way and hope it continues to work out fine.

e

[Guest guest]

Hi Ellie,

Just wanted to let you know that I'm glad everything went okay. I hope Riley continues to tolerate it well and that she has a good, measurable, response to it. Though it can take quite some time before becoming effective, it often does lead to marked improvements.

Take Care, Georgina

----- Original Message -----

From: skyley8@...

Wow, with all of this controversy I forgot to update you all on Riley! Which just goes to show, you're right about it being fairly uneventful! She actually started this morning and aside from being a bit tired, she has been fine. Playing swimming etc... She ate lunch, hasn't mentioned any nausea. Maybe a bit moody, but that's about it. I'm forcing tons of juice on her. Thanks everyone for helping me through this step. It feels so good to actually be doing something! Hugs to everyone Ellie and Riley

[Guest guest]

Thanks Michele, How quickly did he respond? Her rheumy did say to start at night next week, just give it in the morning the first time so we can keep an eye on her. I hope she responds well and quickly. It's so hard to see your once strong and active child moving like an old woman. I wish it were me instead. I'd better stop, I'm starting to get teary eyed.

Have a great day.

Ellie and Riley 4 poly

[Guest guest]

I know I am late with this but just wanted to add that does take his at night. He takes folic acid every day except on the day he takes the MTX. He responded quickly to the MTX and has been able to move so much more without pain. One thing I have noticed lately is that he is now ( 6 months after starting) having episodes of fatigue the next day. That didn't happen at first but we have noticed it the past few weeks. Could be the med, could be the fact he is doing alot more with the nice weather. Not sure, just wanted to put that out there for some info for you. Good luck and I hope she responds well and quickly! Michele

-----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Friday, May 31, 2002 6:34 PM Subject: Starting methotrexate tomorrow allHi everyone, I'm just getting a bit nervous because Riley is starting her mtx tomorrow. Does anybody have any tips or info to share. I have all of the pamphlets and all that stuff, but I would love some personal feedback. She is to start in the a.m. with 10 mg. I know a lot experience nausea at first. Is it important that she have a full stomach? Any tried and true tips from any of you expert jra Mom's and Dad's? I really appreciate the info that you all share. Take care, Ellie and Riley 4 poly

[Guest guest]

Within about two weeks started saying he felt less stiffness in the morning and his back was feeling better. Of course, he has had ups and downs but for him it has worked well.He is to the point where he is doing quite well. I know what you mean about the "old woman". For me it was watching my sports loving son moving like an old man. I get teary eyed too, still. It is so frustrating to know there is something inside your child that you cannot control. sometimes "forgets" to take his Clebrex for a day or two - as a teen he thinks he is "supeman" and doesn't need anything - and then he gets up in the morning limping again. I hate that. I hate him having to take pills to be able to walk! Now, my eyes are filling. Guess all we can do is lean on each other and realize we are not alone. Thanks for being out there everyone! Michele

-----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Monday, June 03, 2002 2:07 PM Subject: Re: Starting methotrexate tomorrow allThanks Michele, How quickly did he respond? Her rheumy did say to start at night next week, just give it in the morning the first time so we can keep an eye on her. I hope she responds well and quickly. It's so hard to see your once strong and active child moving like an old woman. I wish it were me instead. I'd better stop, I'm starting to get teary eyed. Have a great day. Ellie and Riley 4 poly

[Guest guest]

Hi Michele,

I know just what you mean. I took Riley for her swim lesson today. All of the other kids were jumping in and out of the water to sit on the edge of the pool and the instructor had to help her. I started crying watching her. It's so hard to see her struggling. Then she would look at me and I would smile and wave. Thank goodness I was wearing my sunglasses. I feel like there is a monster inside of her little body and I can't do anything about it. Naturally we want to protect our children. We teach them not to talk to strangers and we don't let them wander off. It's just so frustrating that now there is something inside of them that we have little to no control over. We just have to trust the doctors and hope and pray for the best. It's just not fair. Sometimes I am just so frustrated and angry that I want to scream. Sorry for all of the venting. Today is my birthday and I think for some strange reason it is making me sadder. Maybe because it is supposed to be a happy occasion and I don't feel like I have much to be happy for right now. Don't get me wrong, I have a wonderful supportive husband and two beautiful children. I just want her to be okay. Okay Ellie, pull it together. If I keep sobbing all over my keyboard it's gonna short out. I pray for each and every one of you, your babies and all of you jra vets every night.

I wish this didn't exist.

Love to all,

Ellie and Riley 4 poly

[Guest guest]

My dear Ellie,

It is so easy for me to say this at my vantage point and if was more outgoing I would get her to say the same....yes it is SSSOOOO hard for us to see our kids see that they are different and can't do this or that. Do you know what...THEY LEARN that other people have their interest at heart and LEARN to trust others when WE are unavailable. Heaven forbid! This could mean classmates or teachers....it is really refreshing how many people want to help a person who truly needs it. This is a really great let go and let them be kids moment. Oh how great that you were able to share it with all of us! It forces us to relive our "moments" of reality. You will be so grateful in the end. Really. All of us feel your frustration. All of us feel your pain and aguish. We all walk with you. Hug you and pray for an end to this. Oh Ellie, feel blest that you were given Riley to love and cherish. She will be so compasionate when she is older. Not greedy or wanting more then possible. This will be a greater gift then what you will be able to give....and one you will cherish a lifetime. If you were a neighbor I would come with a fruit bowl or banana bread (sorry Robbin the corn bread STILL didn't work!) and watch TV or just sit out back with you. This is Riley's reality. Any other she doesn't know. You can see this as a blessing or a curse. However, this should help YOU realize that this is all she has known. Sad as it seems, it is worse for us. They seem to have a threshold that we just don't understand. Am I rambling? sorry. has been such an open window with me that I wanted all of you to know that she was at 3 years of age saying that if this is all arthur can do well old age will be a breeze. She doesn't remember it but I do. That she is willing to deal with her illness on a level she understands was an outrage. She shouldn't have this pain, swelling or limits. So to you my dear Mom, be just like us. Mad as #$%^, arragent, happy and loving.

Only warm hugs to you and the cutie Riley.

Have a sunny day!

Carol

[Guest guest]

Hi Michele and long tall drink of water! Chris

I'm making headway through the more than 500 posts I had after my little vacation?

Acualy, was visiting my sister for a week.

I seem to be feeling better now a days since I started the Mtx. Along with the Vioxx and Naprasyn.

And if I don't take my Vioxx for a day, I surly do feel it too!

But your right, at 15 they do think they're invincable.

Until they get a boo boo and need momy to make it better!

A little tease there Chris!

At age the only meds I was taking was pred and asprin.

I think the main thing that kept the jas from really taking over was! the fact that I was so active.

So keep going there little, I mean tall buddy don't let this stuff beat you down, nor anyone else on this list.

Rusty Limbs

On Mon, 3 Jun 2002 14:51:08 -0500 "Tepper, Michele" <Micheletepper@...> writes:

Within about two weeks started saying he felt less stiffness in the morning and his back was feeling better. Of course, he has had ups and downs but for him it has worked well.He is to the point where he is doing quite well. I know what you mean about the "old woman". For me it was watching my sports loving son moving like an old man. I get teary eyed too, still. It is so frustrating to know there is something inside your child that you cannot control. sometimes "forgets" to take his Clebrex for a day or two - as a teen he thinks he is "supeman" and doesn't need anything - and then he gets up in the morning limping again. I hate that. I hate him having to take pills to be able to walk! Now, my eyes are filling. Guess all we can do is lean on each other and realize we are not alone. Thanks for being out there everyone! Michele

-----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Monday, June 03, 2002 2:07 PM Subject: Re: Starting methotrexate tomorrow allThanks Michele, How quickly did he respond? Her rheumy did say to start at night next week, just give it in the morning the first time so we can keep an eye on her. I hope she responds well and quickly. It's so hard to see your once strong and active child moving like an old woman. I wish it were me instead. I'd better stop, I'm starting to get teary eyed. Have a great day. Ellie and Riley 4 poly