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Has anyone out there been prescribed Busulfan and how did it affect you? I have been having a few issues with Hydroxycarbamine and have been taken off them for the time being because of nausea and it is proposed to try Busulfan but upoin reading the side effects am a bit concerned
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peter98873 bernard42121
Posted
Busulfan is often used when Hydroxycarbamide is found to present difficulties with patients and both drugs operate similarly in use, Busulfan affects the bone marrow directly and thereby may bring a fall in the blood count. In my own treatment with Hydroxycarbamide I suffered severe side effects and was given a single massive dose of Busulfan to cleanse my blood of Hydroxycarbamide and for the next month or so I was completely off drug therapy. I returned subsequently to more HydroxyC but after a few months again underwent the same cleansing treatment as before. I was then on the research trial for Ruxolitinib and my consultant haematologist obtained authorisation for me to be treated with Ruxolitinib (Jakavi) which I now still take. My own experiences of Busulfan lie with the two dosages I describe. which cleaned the Hydroxy from my system. I am aware that Busulfan is normally prescribed as a short term courses and needs regular professional supervision. Like other drugs this can also produce unwelcome side-effects and affect the bone marrow too. Further it can cause an advance into a more serious condition. I suggest you discuss this matter fully with your haematologist to ensure you have the best advice. I was not aware of any adverse reaction from taking Busulfan even in such large doses. Hope this is of assistance. Good luck.
Peter.
bernard42121 peter98873
Posted
Thanks for getting back to me Peter. I have been offered Busulfan as an alternative to the Hydroxycarbamide but didn't realise it was used to clean the Hydroxy from my system but only to have in bursts from time to time. Did you experience any side effects from the Busulfan as the information I have been given is pretty frightening to read? The one thing that the Hydroxy did was to reduce the extreme itching I was experiencing so I certainly don't want a return to that but I cannot cope with the sickness and extreme tiredness.
peter98873 bernard42121
Posted
Hi Bernard,
No, I wasn't aware of any adverse side-effects with Busulfan but I only had the two large doses to clear the Hydroxycarbamide. It is not usually possible to go straight from one of this type of drug to another and this is pretty much the same with others used to treat PV. Some people can take Hydroxy for a long time without suffering unwelcome side-effects but others
find differently. PV is a very variable disorder and treatments will vary between patients. We are all biologically different and thus treatments will differ too. Sadly, most drugs associated with PV can offer unwelcome side-effects but not everybody will get them. PV is one in a group of disorders known as MPN's and can progress to others in this group, so good treatment is essential, coupled with good professional advice. If you would care to look at Polycythemia references under "related information" to the right of this page you will find a great deal of useful information about PV and its treatments. This is supplied by professional medics so can generally be relied upon. You should find references to Busulfan, and other drugs for treatment of PV there and some very useful advice too. Itching is a well known problem with PV sufferers and can be treated, often with antihistamine preparations or something similar. Tiredness is a like problem and can be exacerbated by some of these drugs, apart from any age-related symptoms as well. I am sure your haematologist can supply something to ease your complaints, they are the best people to turn to for current treatments and are much better placed than the average GP who possibly will never be presented with a patient suffering PV because of its rarity factor. Stay resolute and let me know how you fare. Good luck. PV may be rare but you are not alone.
Peter.