We started methotrexate and folic acid with my 10 year old yesterday for her...
My daughter was on methotrexate for about 5 years and had the nausea, headaches, and fatigue, but no hair loss.
Did the nausea come right away or as it built up in her system. She complained of being tired and having a headache today.
It was instant for her. She was nauseated within minutes of the meds hitting her system and near vomiting or actually ill for 2+ days after the injection (the pills were even worse!) and she lived in a constant state of fatigue. Honestly, the fatigue isn't much better even now and she's been off the methotrexate for several years, but she's got LOTS of autoimmune issues in addition to an immune deficiency. Unfortunately, the methotrexate/prednisone combo didn't work well for her and it took UVA1 phototherapy to stop the progression. She was inactive for about 2 years and ended up on Myfortic to stop it this round, which has worked well.
Xxxxxxx Yzzzzzz thanks so much for sharing your daughters story. It is helpful to know what might be ahead. Hoping your daughter is on the road to better health.
Thanks! Same to you and I pray the meds work and are a "not terrible" experience for your daughter!
My daughter has been on it for a few months now and we were also told to watch for thinning hair. But have not noticed it at all. Also have not had any other side effects.
My son is a similar age, but he has been on it for years. We have had no hair loss issues. Nausea has been occasional, sometimes coming on even in anticipation of the injection. However, fatigue for him is a more common problem. He is very active, but the day after the injection, sometimes even extending to the second day after, can be very difficult for him.
My daughter struggled with nausea and vomiting but no hairloss or headaches . When she flared up again she was offered mycophenalate which she has tolerated much better although I don't think it has worked as quickly .
Our 8 year old son has been on folic acid and methotrexate since January. He has experienced the nausea, fatigue and "methotrexate hangover", but no hair loss. Husband has been on same since last fall for RA. They go through it together. ❤
My son was on methotrexate for a little over six years and never had hair loss. He did have occasional upset stomach, but our rheumatologist prescribed something for that. We did experience issues with migraine headaches for him. The key was always to get enough sleep. All of those symptoms were very few and far between. The worst experience we had was the fact that he would get cold and flu symptoms much easier than other kids. Eventually we switched to mycophenolate which actually worked much better for him.
My daughter was on it for 3 years. She did experience some hair loss, but it was not noticeable, only in the shower drain.
She would suck on ginger candies to help with the nausea.
Leukovorin (folinic acid) also helped us btw. My son had treatment for three years...We have just stopped his meds. Headaches, nausea were the biggies for us, as well as metallic taste in mouth after injection. He also preferred doing his own injections in order to have more control over things...supervised, of course. He will be 13 in June. Best wishes! Glad you found us!!! We're here for you.
Oh, yes, the fatigue. That WAS noticeable!!!
My beautiful girl experienced the hair loss as a part of the condition (en coup de sabre) a form of Linea Scleroderma - not as a part of the treatment. This stopped with treatment (Methotrexate / folic acid) and has even grown back in places.We had stomach upsets mainly nausea tho, we take additional meds now to help and progress has been good =) The main thing I found is to take it day to day, my girl is 9 but some days looks "70 and hungover" other days she is back to her usual self. Mainly drink plenty of water after meds and sleep sleep sleep =) That makes a big difference! My daughter also has hemaplegic migraines the rest and fluids help with that too. Hope all starts well for you and your daughter =)
You are all amazing. Thanks so much for sharing your stories. It makes me feel better that we are not alone!