Help me please

[Montaha]

hi good folk we are living in Iceland my daughter diagnosed with JIA 3 years ago she used many kind of medication because any medecin she took worked few months then the doctor change it and tried another ones now she is taking simponi injuction and Methotrexate every friday night (friday is her nightmer she hate this day)the big problem she vomittig when she took it ,her Dr. said after vomitting you should give it again to her same time.we decide to come to UK(Manchester) to see a doctore making all kind of test maybe the Dr. will change her medication so please if there is a good Dr. you recomand for us we will appreciate it. thanks

[Barrister]

I can’t recommend a doctor but if she is vomiting or feeling so ill after taking Methotrexate then this can be changed to an injection route. And does she take both Methotrexate and Simponi on the same day? I was always told to inject my biologic on a different day to my Methotrexate so I inject Methotrexate each Wednesday and Benepali on Sunday. Also, does your daughter take Folic Acid? This helps to mitigate the side effects of Methotrexate and many of us take 5 mg Folic Acid 6 days a week ( not on the day that Methotrexate is taken). I hope that someone will be along soon who can recommend a rheumatologist for you.

[Montaha in reply to Barrister]

she tried methotrexate injection first it was the same nausea and vomiting the medicine is terrible for her she could not tolerate it..

[Hidden]

Wish I could help but I know NRAS helpline could certainly give you some good advice. I hope your daughter gets the help she needs it’s an awful disease and to have it so young. As a parent I wish you all the best . There are many medications that can help prevent or slow down damage and getting the right one can take time .

Good luck x

[Montaha in reply to Hidden]

Thanks so much ,but we are in Iceland could not contact helpline😉

[Hidden in reply to Montaha]

you can email us at [e-mail]

[bpeal1]

Hello. I have Rheumatoid Arthritis and my daughter has JIA. My daughter also had vomiting after methotrexate, the injections were just as bad as the tablets. We tried increasing folic acid and we tried ondansetron (even taking for 24 hours before methotrexate) but they made no difference. Her rheumatologist moved her onto leflunomide. Leflunomide isn’t licensed for children but she is a teenager so the rheumatologist was happy to prescribe it. Good luck finding the right treatment, there are other options although for children the options are slightly more limited than for adults.

There is also a forum for parents of children with JIA. healthunlocked.com/jia

[Montaha in reply to bpeal1]

Thanks so much i wish the best for you and your daughte

[Montaha]

i talked to her doctor here in Iceland about the possiblity to change the medecinebeacuse my daughter feel very bad after taking it ,but she said not possible because this medecine is best one .now we decide to come to Manchster to find good doctor who will manage to find better dedecine for her so please if you heard about a doctor who treated kids with JIA give me his address or anything to contact and take appointment. by the way we have only one one Dr. who treated kids with this diseases here in Iceland.thanks for your advise

[Peptink in reply to Montaha]

Perhaps try Celticdancer advice. It would hurt to try until you find another doctor or specialist that may help. Best of luck to your daughter.

[smilelines]

Breaks my heart to read the doctor wants her to stay on a drug that is making her that sick. That is ridiculous. I was on methotrexate and changed to leflunimide and had none of the stomach issues. These drugs are not a joke and shouldn't be played with. Retaking them after possibly throwing them up is crazy because how do you know how much she threw up. So happy you are taking her to a different doctor and maybe you should try to see another doctor in Iceland if you can.

[Hidden]

As has been mentioned here, there are things you can do to reduce the side effects of methotrexate. Also it is not common to take it the same day as a biologic, so suggest you speak to your daughters rheumatologist for clarification.One of the NRAS advisory panel is Dr Emily Willis, Consultant in Paediatric and Adolescent Rheumatology at Manchester University NHS Foundation Trust, although I am not sure if she sees private patients.

If you want some more information please email us at [e-mail]