Hello I am new to the group my 16 yr daughter has JIA and is not under control...
Hi. Same here..15 yr old on mtx, mobic and Humira. No difference yet :( its a hard road momma. We are in MI too <3
Mtx and humira take a while to work .. that what I was told anyways..
We are into our 1st year with this awful disease and still not having it under control..
It is a very hard road to deal with..
My 15 y/o is in a similar situation! She just had her 3rd remicade infusion a couple weeks ago. So far no help. The last 2 days she has been in ALOT of pain. Back, wrists, hips and knees. Also taking methotrexate. Right now she gets infusions every 6 weeks. I'm freaking that we still have 4 more weeks until her next one!! (We are also in MI)!!
We did good on remicade for 3 years it was amazing then her body starting making antibodies .I have never reached out for help so new to this .We have battled for 8 yrs she is allergic to enbral and humria .
It takes a couple times .Is she on folic acid also
My daughter was diagnosed last June. So we are completely new to this. She was on enbrel for 3 months or so. Made no change. I was hopeful with the remicade. She had 3 infusions in 6 weeks to build up in her system. After each one she had about a week of some relief. It gave me hope that this would work. The last 2 days though have been horrible!
Sorry to hear that the remicade stopped working. Hopefully the new med will work. Where is your daughters Rhuematologist? We go to Devos and see Dr. Abulaban.
We see Dr Birmingham at Devos
It was defiantly a good drug for a while she was able to play basketball and run track but now she is struggling to go to school we had to do a 504 plan I just went to a hearing for truancy. so this disease is complete evil
I completely sympathize with those kids who are in public school. I don't know how they do it!! I homeschool so we don't have to deal with that aspect of the disease. Just seeing how much pain my daughter is in the last couple days there is no way she could have made it through school. She struggles to sit for an hour at her homeschool band class. She would be miserable if she had to sit all day at school!!
Yeah we have had to fight to keep her honor cords and me out of jail die to missing to many days even with the doctors notes
My daughter (diagnosed when she was 3 and now 24) has not been responding well to any medication. She has been on antinflamatory supplements now and has been ok for 3,5 years now - no more flares, off drugs, cartilage destruction being slowly reversed. I am surprised how quickly and well she responded to supplements. She has mthfr gene problem which might cause the problem with drugs.
We go to Dr Birmingham too! And we saw Dr A before. We live 2.5 hours away. We are hoping Dr B can help us..its been miserable. Nothing helping us yet. We were hopeful with mtx and Humira but nothing yet. And she is complaining of more pain in different areas. Her knees are killing her! Never was problem till recently
I love Christine his PA also he is a great doctor Hoping you can get answers
What kind of supplements
Yea..back atcha ;) this disease definitely sucks
So I know a few people who started using CBD oil. Contact Realm of Caring for more information. You can place the CBD oil under the tongue 3x a day or even purchase CBD capsules. It's worth a shot to try since no other relief so far. For on the spot temporary relief, my husband uses doTerra Deep Blue Rub and just the doTerra deep blue essential oil with a carrier oil such as fractionated coconut oil. But I've heard and read good things about the CBD oil placed under the tongue 3x a day!