Ever since the clinic last Wednesday, where the Neoral levels were low in my blood test and so the dose was increased, I've been increasingly suffering from the side effects of the drug. So I've had shakes/tremors, a heart rate that won't drop below 100, sickness, tummy pain and a slightly raised temperature. Last night was very difficult - I really didn't sleep at all and at one point was on the verge of calling an ambulance as my whole rib cage hurt so much that I was really worried something very bad was happening inside. But my breathing and oxygenation was ok so I convinced myself it was just muscle stiffness and cramps related to the terrible stomach pain and diarrhoea I was also experiencing. With the temperature, I was too hot or too cold all the time so Vicky and I both had a hard time and are very tired today.
I rang the hospital at 8am and later in the morning went in and had a round of blood tests done as well as talking to the doctor, Jas, who agreed that it was probably the Neoral dose. He's reduced it from 200mg 3 times a day to 175mg. It may well take 24 hours or so for me to feel a bit better so I'm still shaking away and taking paracetamol both for the pain and the temperature. I just really need some sleep tonight so am hoping I can feel well enough. Jas said it is very difficult getting the levels right with CF patients as there are too many variables with the malabsorbtion in the gut added into the mix. Since I take Creon to digest the Neoral it depends how many I take with the Neoral, what food I eat at the same time, how many extra Creon I take to digest that food, whether I get estimations of calories and Creon requirement right and so on. It is especially difficult in the first three months when the levels of Neoral have to be kept high - eventually they will taper down and so the control and more importantly (for me at least) side effects will be less prevalent.
A bit of a down, then, on the rollercoaster of post-Tx experience. But I hope things will get better and I'm back to the hosp for the originally planned clinic appointment on Thurs, so they will check all the levels again then and further tweaks can be made.
5 weeks ago