normally about 10 days. There was the occasional relapse where i had left it too long before starting a high dose of prednisolone, and the steroids took about 14 days to take effect. It was only when i was about 20 that it was clear that i needed 60mg of prednisolone to deal with a relapse.
Watch fluid intake. Kidneys are not functioning properly. There were times when i was limited to a litre a day.
What i understand about the illness, is that my over active immune system flares up in response to something (eg. flu) or even if it just gets bored however, it is my kidneys that bear the brunt of it. My kidneys struggle to do their normal function, so i start retaining fluid while they allow protein to escape. Always notice it in my feet and ankles first. Press hard, and it takes a while for the indentation to bounce back. I also notice a lot of froth in the toilet bowl - that is the protein loss. I guess that the big concern is that the fluid retention puts extra pressure on blood vessels, and leads to increased blood pressure and extra pressure on the heart. Keep your son resting as best as possible. Please note that these are my simple observations and logical thoughts.
After about 10 days, testing urine with Albustix will show that the loss of protein is reducing from 4+ to 3+ and so on down to negative. When protein loss is at negative, a reduction of the dose of steroids can begin. It normally takes a couple of months to complete the reduction.
The steroids are also associated with "Moon Face". I don't know why but long term use makes your face swell. The fluid retention follows gravity, and starts from the feet up.
My mum was great, while at the same time probably being as worried as you are. I was tested for food allergies - there is something called the York Test for food allergies. I cut out lots of foods, including dairy, in an attempt to limit any stress on my immune system. I think it worked and for a long time between ages of 4 and 10 i was very heathy and relapse free. I was also given doses of cyclosporin and cyclophosfomide as alternatives to prednisolone however neither of those really worked.
between ages of 10 and 30, i had various doses of prednisolone, and even some long periods in remission. It was not until about 4 years ago that my consultant offered me Mycophenolate Mofetil (MMF / Cellcept). I had been offered Tacrolimus by another specialist however he didn't like that. These are steroid sparing agents. On their own they will not control a relapse - you still need steroids to deal with a relapse. The MMF is given to transplant patients to stop their bodies rejecting new organs. It's all about supressing the over active immune system.
I regret that i have never found a cure. I was told that i'd grow out of it. The doctors are good at treating symptoms where there isn't an obvious cure. They are looking for cures but as yet there are none that are known to work. The immune system has had a jolt of some sort - maybe chicken pox - but the fact is that the immune system is now over sensitve.
I take a multivitamin supplement and cod liver oil pill every day. I have an active lifestyle and honestly i feel great. I am not sterile and my wife is about to have our first child.
Be patient with the steroids. They need time, especially when a relapse has got a hold as this one sounds like it has. I eventually managed to catch relapses very early, by testing my urine weekly and watching closely for the signs.
I am not the best at typing and writing coherantly and would be happy to chat if you end up with more questions. Things get easier and we all learn to live with it.
Best wishes - Lewis