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Hi i have lived with an mpn (et) for about 14 years. I am on hydroxycarbomide daily. My husband was also diagnosed last february and is not coping with medication very well. He started on hydroxy but was very poorly on it so his consultant put him on analgrelide. The side effects are even worse. We are finding it quite hard especially when we are both having bad days. I also have copd emphacemia and osteoarthritis and coronery vascular desease. We are struggling financially and wondered if we can get any help. My husband is 69 years old and i am 61 and living on just his pension. I would be grateful for any advice
I’m sorry that you and your husband are having such a difficult time. It can be difficult when you are first diagnosed with an MPN to adjust to the side effects of medication. These can leave you feeling poorly. Anagrelide and hydroxycarbamide are not the only drugs that can be given though. It might be worth making a list of side effects and grading them 1-10 (10 being the worst) and taking it to your husbands next appointment. This will help the consultant decide about any changes or adjustments to your husband’s tablets. It may also be useful for you to have a look at the mpn voice website for tips on living with MPN’s and details of their patient information days. These are a great way to meet other patients and hear talks by experts.
Macmillan has a welfare rights team that can offer advice on benefits you may be entitled to and a financial guidance team that can help with financial issues. Just call the Macmillan support line free on 0808 808 00 00, Monday to Friday from 9am-8pm. If you need any other help, please contact us again.
Caroline - Macmillan Information Nurse Specialist
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
Thanks for responding to my post and advice given. My husband sees his specialist on monday.
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