So today Reagan has her 30th day on steroids. Yesterday we went to see Josu for a review and to make a plan about the weaning process.
As I said she has had weekly blood tests to monitor her progress. FYI reagans bone marrow doesn't make enough red blood cells, when blood cells start out they are called precursors and the name for the amount of precursors is called the reticulocytes (retic). So usually hers is below normal, normal being between 25-85. HB should be between 12.14. Here's how her blood test have gone over the last month
Start. Wk1. Wk2. Wk3. Wk4.
HB 12.3. 11.3. 10.5. 11.7. 11.6
Retic 17. 94. 86. 390. 167
So it looks good so far as we would hope. Now the weaning process begins. Her current dose is 22.5mg per day and now we have to spend 1 wk giving 19mg every other day, then the following week it's still 22.5mg one day and alternate days 16mg. This continues to go down by 3mg per day until we see him in 4 wks time. Again she will have wkly blood tests to monitor her. So this is the real test!!!!!
So I bought a wkly pill box organiser to help me!!! He also prescribed her some sporanox, the steroids have given her oral thrush. It has a lovely list of nasty possible side effects!! Most of which I have no clue as to how on earth we'd know if she was suffering from them. So an even closer eye on her now.
And then this morning she woke up with a cough, cold and temp of 39.1!! So we took her to frimley hospital and she has pneumonia again!!, so more meds. 2 sets of antibiotics.
One set made her gag till she was sick, so I didn't give her the other set yet, then when I gave her her sopranos! She spat it all back out...so it's going well so far.