
The treatment with Zavesca^® In 1995 I came under the treatment of Carla Hollak at the AMC in Amsterdam. She treats patients with Gaucher disease and knows practically everything about the disease. She determined that for me treatment was now really necessary. Then at that time a new drug became available: Zavesca^®. I was given the choice of participating in a study into the new drug that you had to take three times a day, or a treatment with infusions. Now I don’t have anything against an injection; throughout my life I have had needles in me so many times that I am no longer afraid of it. But the couple of days for the infusion for the rest of my life, that did not appeal to me at all. You are then so often confronted by your disease, you have to go back each time to the hospital, you cannot go on holiday without having to arrange everything – I don’t even want to think about it. So I decided to participate in the study as a trial person. We were very well supervised and throughout the occurrence of any unexpected side effects were looked for. It was an international study, so if someone somewhere in Europe who had been treated with Zavesca^® got a lung infection, for example, lung photographs were immediately taken. This certainly gave me a secure feeling. I have hardly had any problems with side effects myself. At the start I had a bit of trouble from thin motions. Not real diarrhea, I did not have to visit the toilet any more often. I have heard from others that at the start they had somewhat more trouble with diarrhea. This is of course an unpleasant side effect. But it passes. And people go without concern on holiday to Egypt or India while they know that they run a considerable risk of diarrhea. So I think that you mustn’t make too much of it. Through the treatment with Zavesca^®, the swelling of my liver quickly subsided. And slowly I noted that I was less tired. I could work more and, if I had done a little too much, I felt fit again more quickly. So for me Zavesca^® has worked well. Finally, one further remark. I was prescribed Zavesca^® because I took part in the study. Zavesca® is now a registered drug. It is intended for patients with mild to moderate type 1 Gaucher disease for whom the normal treatment with infusions is not suitable.

The treatment with Zavesca^®

In 1995 I came under the treatment of Carla Hollak at the AMC in Amsterdam. She treats patients with Gaucher disease and knows practically everything about the disease. She determined that for me treatment was now really necessary. Then at that time a new drug became available: Zavesca^®. I was given the choice of participating in a study into the new drug that you had to take three times a day, or a treatment with infusions. Now I don’t have anything against an injection; throughout my life I have had needles in me so many times that I am no longer afraid of it. But the couple of days for the infusion for the rest of my life, that did not appeal to me at all. You are then so often confronted by your disease, you have to go back each time to the hospital, you cannot go on holiday without having to arrange everything – I don’t even want to think about it. So I decided to participate in the study as a trial person.

We were very well supervised and throughout the occurrence of any unexpected side effects were looked for. It was an international study, so if someone somewhere in Europe who had been treated with Zavesca^® got a lung infection, for example, lung photographs were immediately taken. This certainly gave me a secure feeling.

I have hardly had any problems with side effects myself. At the start I had a bit of trouble from thin motions. Not real diarrhea, I did not have to visit the toilet any more often. I have heard from others that at the start they had somewhat more trouble with diarrhea. This is of course an unpleasant side effect. But it passes. And people go without concern on holiday to Egypt or India while they know that they run a considerable risk of diarrhea. So I think that you mustn’t make too much of it.

Through the treatment with Zavesca^®, the swelling of my liver quickly subsided. And slowly I noted that I was less tired. I could work more and, if I had done a little too much, I felt fit again more quickly. So for me Zavesca^® has worked well.

Finally, one further remark. I was prescribed Zavesca^® because I took part in the study. Zavesca® is now a registered drug. It is intended for patients with mild to moderate type 1 Gaucher disease for whom the normal treatment with infusions is not suitable.

The treatment with Zavesca®

The treatment with Zavesca^®