anyones kid ever been on Methotrexate?? PIOG

[kctnelms]

My daughter is 9 and she has had juvenile rheumatoid arthritis since she was four, but she has been in remission for about 3 years now and out of the blue about a month ago it came back and it is in 6 of her joints now and lots of swelling and pain, we just moved about 8 months ago and had to see a new dr in atlanta this week and she is putting her on Methotrexate and i have done alot of research on this but wanted some input from personal experiences. She is also on a round of steroids and Naproxen. I hate to watch her in so much pain and hope that this treatment will work. just hoping someone has personal experiences with this med and auto immune disease..

thanks

[elysesmom123]

I am really sorry to hear that your daughter's jra is back.  I am sure you were grieving because a mother is only as healthy as her sickest child.  My daughter was on Methotrexate when she was 18 ( she got jra when she was 12) and it never seemed to help at all.  It takes up to 12 weeks to get into the system so it was forever and a day of pain and discomfort to finally realize that it wasn't doing anything for her.  She is now on Humira (2x month injections) and has done WONDERS for her.  She is a teenager once again and has been a godsend.  It is very expensive but so far with our insurance and the My Humira program, we have not paid a penny for it, another godsend.

I wish you all the best.

[snoozy75]

My daughter is 5. She has been on MTX for about a year and a half. She started out on pills the was switched to injections becuase of veitis. Some children have tummy troubles. Brianna was put on Zantac to combat her sore tummy, after she started losing weight. We usualy give her shot to her before bed. We started out giving her Gravol at first to see how her tummy reacted but she never got nauseated as some kids do. We make sure and let her know everything we are doing. Don't sugar coat it. We put a little Emla (numbing cream) on her about a hour before. She has chosen for us to do it in her bottom, but you can do it in other spots too. She is pretyy skinny and has no fat anywhere else.

So not sure if yours will be on injections, but thought I would throw that in there. Also, our daughter had steriod injections into her joints immediately after being diagnosed which put her inflamation down until the MTX kicked in. She had instant results. We have found that being as agressive as possible is the best thing. If there is pain, swelling and heat, then there is damage being done. get the flare under controld ASAP.

So she has POLY? That is what our Brianna has. She also has had Uveitis so bad, so many times that she is also on Remicade infusions. Don't go 6 months without seeing a Opthomologist. By then the Uveitis could be very bad.

Hope this helps. PM me anytime!!!! Good luck :o)

Sue

[kctnelms]

hey thanks for the replies, yeah she has Poly. We are doing a round of prednisone right now and i just started the Methotrexate this weekend because i will not give her new meds without me being with her all day to watch her to make sure she does not have any kind of reaction to it. so far so good. She has an appt with the opthamologist on sept 11. i know when she was first diagnosed years ago i think we saw the eye dr every three months then it went to every six months now we will be back to 3. We will follow up with the dr in about 3 weeks also to see if anything is working yet. I have already seen a reduce in swelling in the past couple of days thank goodness. thanks again for your input i really appreciate and now i know i have some one to talk to that understands what i am going through

thanks again

[ediblebaby]

My daughter (3-yrs-old) is on Methotrexate, but in conjunction with Enbrel. We started on just Methotrexate, but didn't get as great a result as we had hoped. The combo was like a dream for her, but if you red the post I put up about the new black box warning, you'll see that everything has its price. So we hope the Methotrexate on its own will keep things at bay for her as soon as we wean her off the Enbrel. 

She has been flare-free for a year and I'm keeping my fingers crossed.

The Methotrexate can take months for you to see its full effect, so try to be patient. It's so hard. Also, it can give your daughter upset stomachs. We were advised to give it to her in the evening, when she didn't have anything important to do the next A.M., just in case.

Good luck.

[Blessedw5]

((hugs))

I imagine it's pretty hard to come back to all this after having had remission for so long.  My 6 yo son is only newly diagnosed, so I have little advice to give.  He has systemic JIA.  He was given mega doses of steriods in the hospital, and came home on prednisone, naproxen and Methotrexate.  We are doing increasing doses once a week of the MTX, given orally, and decreasing on the prednisone.  So far, knock on wood, he is doing wonderful.  I was told it would take 4-8 weeks to see if the MTX was working....

Good luck and God Bless!

[ediblebaby]

My daughter is on a combo of methotrexate and Enbrel. She can't take NSAIDs (they inflame her liver) so we moved on to Methotrexate alone, didn't get the relief we'd hoped for so we combined it w/ Enbrel. The 2 together worked like a magic wand. She has been just fine for a year (she was diagnosed in May '08 w/polyarticular JRA at the age of 20 months).

For many people, Methotrexate works fine on its own. You have to give it some time though, to reach its full potential in your child's body (around 6 weeks, give or take). Your daughter could get upset stomachs the day after taking the meds, so give it to her in the evening, before a morning when she can lay low.

Good luck.

[tigergal31]

My daugher is 15 and was diagnosed at 18 mos. We have run the table on meds over the years. Right now our miracle is Remicade infusions every 8 weeks. We have used Methotrexate over the years, both oral and injections. Her tummy was very sensitive to it, so much so that she would vomit as soon as she took it orally or by injection. Then she felt really bad for about 2-3 days....just in time to do another dose of it! By the time she got into high school, it was taking up her weekends because she felt so bad the entire weekend...and we had to do it on weekends so she wouldn't miss school.  Sometimes using Folic Acid will help make the tummy issues a little less, but it never helped her unfortunately. We also live in Georgia and use a Rheumy in ATL, so let me know if you have questions....Good luck and do be sure to stay on top of any eye issues....they can slip up on you and you never know they are inflammed! 

[blessedbytwins]

Our daughter has dopamine responsive dystonia and was daignosed with JRA in 4 joints April of this year. She has a +ANA factor. We immediately started her on Methotrexate injections and Folic Acid and had steriod injections in her right knee/ankle. The Opthomologist diagnosed her with Uveitis as well and had to take steriod drops for a couple of months - the MTX is keeping the uveitis under control now. However, we took her for her 3 month check up on Tuesday with the Rheumatologist. She has two more joints involved, so she now is poly. We have her scheduled for injections in her left knee/ankle the beginning of December and the Rhuematologist said he would probably have to start her on an additional med because the MTX isn't controlling the inflamation in her hand joints. She hasn't had any trouble with taking the MTX injections...no nausea. I give it to her in the evening before bed which seems to work for her. At times, she is extra tired for a day or two after the injection. Good luck with your daughter; I'm sorry to hear about it coming back!! 

[kctnelms]

Thanks ladies, i really appreciate all the input. We were seeing a dr in atl and then followed up with her last week and were told she is closing her practice at the end of december so now i have to find another dr and start all over again with a new one. I feel like the MTX and naproxen and prednisone is not working at all. I do not see an improvement at all other than some of the swelling has gone down soon. when we saw the dr 2 weeks ago she now has it in her right knee almost all of her fingers, her right wrist, left shoulder and left neck area. It has got to the point lately that she is having problems writing in school because her wrist and fingers hurt her so bad. i feel so bad for her because as a mother i hate to see my child hurting and there is nothing i can do about it. But i hope this new dr that we are supposed to see in jan will have help for us!

thanks again ladies...

[snoozy75]

Maybe she need the MTX dose put higher or needs Remicade added to the mix. Keep trying untuil you find what works. remeber as logn as there is symptoms there is damage being done. Good Luck!!

Susanne (Brianna 5 Poly MTX & Remicade)