Hello everyone. I have been taking the drug Danazol, prescribed by my haematologist, for over a year now. It has helped to boost my red blood cell numbers and has meant that I have required less frequent transfusions of red blood cells. However, today I found out from the hospital pharmacy that it is unavailable and there is no likelihood of getting any. Has anyone else had this problem and is there an alternative drug that could boost red blood cell numbers? I have end stage myelofibrosis and very poor bone marrow function. Thank you. Willow
Oh, Willow, what a hassle which you could really do without, perhaps it is back to your medical team as they might have to give you another alternative option or prescription. How have you been lately?
Thank you @Erica. Just by way of an update. I spoke to my haematology nurse straightaway and have spoken to her every week since then. She just keeps telling me to ring back in a few days if I haven’t heard anything. In the meantime I now only have just over one week’s supply of Danazol left. It concerns me. I wonder if anyone else has experienced drug shortages or difficulties in obtaining supplies? Some say it is due to Brexit or maybe COVID-19 or something else? I would be interested to hear. Thank you. Willow
Hi @Willow, it is not something that I have seen on here as a problem it might be worth
contacting the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at email@example.com. I have also asked on another site. We await. Please keep updating us.
I’m so sorry to hear this @Willow, I imagine this must be very concerning for you. Does your haematology nurse or your consultant know the reason for the shortage, and how long the delay might be?
Please do give us a call if you want to chat this through.
I wonder if anyone else is having a similar problem?
Thank you Alice for your kind words and understanding. I am very pleased to report that I got a phone call yesterday (23 July) to tell me that some Danazol had been sourced - not sure where from yet - and it is going to be couriered out to me within the next few days. Can’t complain about that! Best wishes. Willow
Oh @Willow, that is brilliant news that some Danazol has been sourced for you. Please keep letting us know how you are.
@Willow I am so pleased to hear that they’ve managed to sort this for you! Has it been delivered to you yet? Thanks for the update!
@Alice. Thank you for your interest. I have just received the Danazol this afternoon. Perfect timing as I had one dose left! I am feeling very fatigued and short of breath at the moment as my Hb has dropped. Hope to have transfusion of some red blood cells next week. Take care. Willow
Wow, @Willow, that was a bit close I bet you have never been so glad to receive your medication. I am so sorry you are feeling so fatigued and short of breath, please be careful as I believe the weather is going to be hot this week and I find those temperatures really exacerbate those feelings for me. Let us know when/if you get your transfusion next week? Be kind to yourself.