Neutrophils further Decrease

Having started pegasus in January my Neutrophil counts dropped below 1. I was moved to bi weekly injections 4 weeks ago but my count has further dropped.
What are the approved treatments in England. I know Besremi is only approved in Scotland. Id rather not go on Hydroxy long term.

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Hi @DougyW.
I have copied in the @BloodCancerUK_Nurses who will know much more about what you are asking. Are you able to get any information from your medical team?

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I have a regular haematology consultation tomorrow thanks. Will know more then but would like to know my options.

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Maybe give the helpline a ring before your appointment?

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Thanks will do in the morning

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Oh @DougyW please do let us know how you get on, I will be thinking of you, @Nichola75 has given you great responses which I reiterate
Take care of yourself

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Hello @DougyW - sorry you are having troubles with your neutrophils on your Peg treatment puts another layer on things being dealt with doesn’t it - I am sure your haem will give you good guidance on how to manage things - were your neutrophils normal count levels before the interferon treatment or were they a bit low anyway and now dropped further ? I ask as someone with long-standing chronic neutropenia over the years - I have been on both Hydroxycarbamide chemo treatment for Essential thrombocythemia (ET) (13 years) and five years now on interferon - my neuts always hover just over 1 all over the years - but it’s worth asking for autoimmune blood tests to be done when on interferon and having low neuts - low neutrophils can tally in with autoimmune conditions that interferon can then effect a bit more so it’s a worthwhile check especially if your neuts were on the lower side before the treatment. It may just be however the treatment itself and of course your consultant will assist that and keep you looked after. Keep us posted

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Thanks for getting back Jilly. My Neutrophils had been 5 - 7 prior to going on Peg and it was a clear change after the injections started. My moncytes have been historically high and are also starting to come down which us good.

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Ive been taken off all medication for 4 weeks to try & get the Neutrophils to recover. Then see what we do. It was a different Haemologist this time wh questioned why a fit 61 year old with no symptoms needed to be on any treatment apart from asprin & venosection as required. Thatvhad been 3 monthly.

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Him @DougyW please do keep us updated and look after yourself

Ah right defo the interferon then isn’t it - and hopefully should soon rectify now you are hsving a break from it - bit of trial and error to get the right treatment for each individual isn’t it but you will get there :grinning: all the best

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Hi @DougyW,
Thank you for keeping us all updated. I’m glad you have a plan and having a break from treatment will also allow your team to understand how your bloods overall cope.
As you will have recognised by now everyone’s experience on drugs varies and your neutrophils can certainly be affected. Living with neutropenia can also be manged but of course your team will want to avoid this where possible and will also look balance out treatment versus risk.
I hope your bloods improve with the treatment break and should you need any support don’t hesitate to get in touch with our support line- 0808 2080 888.

Best Wishes, Lauran

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