The first day my son went onto medications, he started feeling better within hours of the first dose, but the rash was finally gone when he woke up the next morning. It was a miraculous moment, as we had never seen him rash-free I was staring at him, and his milky white skin in awe, and it was a "pinch me I must be dreaming" moment. I am so happy for you! More importantly he was not suffering from the headaches, pain, fatigue and more severe symptoms within the first few days, and started to walk and even jump and run a few days later. it was to us, a miracle and tears of joy were flowing. He has NOMID, so before he went onto medications he was very weak, and could barely walk without pain and fatigue on most days,plus was anemic, and had stopped growing for over 1,5 years on top of brain inflammation, headaches, fevers, red eyes and pressure on his optic nerves too. He was one of the lucky ones that he started early enough to halt, or reverse some of the most concerning symptoms, including his hearing being saved (it was at the start of being affected, but that was halted).
May you all have a blessed and most joyous Christmas ever! I had the opportunity a few years ago to meet the scientists that created this drug, and I was with another patient on the medication that has MWS, and she is on this drug too. We were teary eyed thanking him for his efforts, and he was so amazed to get to meet people that their lives were blessed by this drug, and was deeply touched. It was a nice moment, and we are so thankful that doctors and researchers are working hard to help people with autoinflammatory diseases now. More needs to be done, but these drugs are really amazing!