Does anyone take methotrexate? What has your experience been like? I’m honestly a little nervous because of all the possible side effects.
Also, does anyone get really intense itching? It almost feels like an internal itch that you can’t reach. If you’ve experienced this, what helped?
Ty 🫶
Hi everyone, I’m hoping to hear from ppl that have gone through something similar because im worried lol
My mom was diagnosed with Still’s disease earlier this year after being hospitalized with high fevers up to 3x a day and extremely high ferritin levels (over 30,000).
She had to start on 60 mg of prednisone. Thankfully she responded well, and over the past several months she’s slowly tapered down while starting Ilaris (canakinumab). She’s had 5 Ilaris injections so far, and her labs have improved a lot. Her ferritin was around 740 last month, which is a huge improvement from where she started.
However, we’ve noticed that when she gets down to 5 mg of prednisone, she seems to flare. Previously, when this happened, she had to go back up to 10 mg and slowly taper by 2.5 mg every two weeks.
She’s currently back at 5 mg, and now she’s developed fevers up to 103°F again. She also recently had lots of stress and emotions so I wonder if that causes it to flare?
She had some stiffness and joint pain yesterday but today she doesn’t thankfully, and she doesn’t seem nearly as sick as she was during her initial flare, but seeing another 103 fever scared me
Her rheumatologist previously mentioned that if she flared again he would add methotrexate but that honestly makes me nervous because of all the intense side effects like cancer as he said..
I’m wondering if doing the daily. injection would be more effective than the monthly
Please let me know if you’ve been through something similar or any advice