Hello everyone. I am waiting to start iron chelation with Desferrioxamine via a pump that I will wear overnight everyday. I previously tried this in tablet form but it made me very unwell with nausea and diarrhoea. Just wondering if anyone else has any experience of this drug via a pump? I am not looking forward to it but my iron level is now dangerously high due to all the units of blood I have required over recent years. Thanks so much. Warm wishes. Willow X
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Hello @Willow Just wishing you well with the new procedure and hope the side effects arent too drastic ,nausea is horrible .I dont have any experience of your treatment but ive had the symptoms you describe, nausea for other issues so Im understanding what that is like,and I hope all goes well with it for you
Warm wishes to you.
Bannanacake
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Hi @Willow. Hoping that your body tolerates this method better. Hopefully somebody else can share their experiences x
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Sorry @Willow I cannot help, but I will be thinking of you loads and I really help that this form of administering your medication will give you less side effects and you will also get a good nights sleep…
Look after yourself, be kind to yourself and please keep posting xxx
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Thank you so much @Bannanacake, @Nichola75 and @Erica for your kind and sympathetic responses. I haven’t started the treatment yet but had a call from the hospital pharmacy wanting to deliver the kit and trying to persuade me to learn how to do it by watching an online tutorial! I stood my ground and said that my haematologist wants the Home Care Team to teach me in person and monitor me while I get used to it. Am waiting to hear more. Warm wishes. Willow X
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Well done for standing your ground. Things like that need to be done in person!
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Oh @Willow I am very proud of you standing your ground, what is the world coming to an online tutorial, you are not a flat pack from Ikea. In my case why do I always try to assemble myself and end up with a screw loose !!!
Please let us know the next stage and look after yourself and be kind to yourself
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Hello everyone. I am still waiting to hear from the Home Care Team to start me off on this iron chelation treatment. It seems there is no one else on this Forum who has any experience of this who I can compare notes with? I tried it in tablet form a few years ago but had awful side effects so this time it will be administered subcutaneously for twelve hours a day, everyday. Would still like to find someone who is also having this to reduce their high iron levels, whether in tablet form or subcutaneously? I think patients with Polycythaemia vera (PV) or Myelodysplastic syndrome (MDS) can sometimes experience high iron, although mine is caused by all the units of blood I have needed for my anaemia due to Myelofibrosis. Thank you. Willow X
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Hi @Willow. I was hoping somebody would be able to share their experiences with you. How are you feeling at the moment? Any idea on a start date?
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Thank you @Nichola75, I am apprehensive for a number of reasons. Apparently a lot of people choose to be connected to the device overnight but I don’t want my sleep disrupted any more than it is anyway, so am thinking of trying it in the daytime initially. Still no start date but I am told it will be soon. Thanks for thinking of me. Hope you are doing okay. Warm wishes. Willow X
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Oh @Willow of course we think of you and please let us know when you get a start date, hopefully on the daytime routine.
Be kind to yourself and say your thoughts and needs.
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I can understand your worries.m, especially around sleep. Keep it a updated. Lots of love X
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Hi @Willow still thinking of you, any update, any news about the Home Care Team and when you are going to be ‘connected up’
Look after yourself and be kind to yourself
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Thank you so much @Erica for thinking of me. The saga continues! I have received a number of phone calls from the pharmacy but still no start date for the iron chelation. The Home Care Team are supposed to be contacting me soon. I have chased it up. Will be speaking to the haematology nurse specialist next week so I will ask them too. Bit frustrating. Promise I will update you when I know more. Thanks again. Willow X
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