I am asking this question on behalf of my sister who was diagnosed with Essential thrombocythemia (ET) last autumn. She is taking Hydroxycarbamide and is getting quite an extreme reaction to insect bites. The bites are large, red and very itchy. Has anyone else found that they react more than they used to since taking Hydroxycarbamide? Thank you. Warm wishes Willow x
When I talked to my specialist about moving onto hydroxycarbamide, he warned me about body ulcers particularly on the legs. Not sure what the difference would like between an ulcer and bite?!
Definitely worth mentioning to the med team
Also it maybe other things escalating the itching. How’s her iron? May also be creams or clothing or washing liquid/powder that be reacting to the hydroxy
Hope you’re well @Willow
Thank you @Rammie and @Erica for your wise words and advice. My sister has been to a pharmacist who has confirmed they are insect bites and says it is the time of year for them. We are just wondering whether the Hydroxycarbamide maybe causes allergic reactions to insect bites to be more severe? She will mention it at her next appointment. I am pretty sure they aren’t leg ulcers. Thanks for your kind replies. Willow xx
I’m not on hydroxycarbamide, but I do seem to get a bigger response to insect bites since starting Interferon. Large, painful swellings that can take a couple of weeks to subside.
Hi @CosmicHobo absolutely great to hear from you again.
Thanks for your experiences that is what our forum is all about.
Look after yourself.
So interesting, @Willow. I’ve got different but similar Myeloproliferative neoplasms (MPN) to your sister, Polycythaemia vera (PV), and I’ve noticed my insect bites seem worse somehow since I started hydroxyurea. Used to get very strong reactions to mosquitoes anyway, but thankfully not had many this year so far and thus fewer mosquito bites to contrast with the pre-Polycythaemia vera (PV) times. I’ll keep a mental note should there be any insect attacks and get back to you about my findings
Should it be of interest to your sister, I find spraying myself with a repellent made from 25 drops of lemon eucalyptus essential oil mixed with 4 ounces rubbing alcohol/witch hazel/vodka and 1 tsp water really keeps mosquitoes away, even when camping. Has to be lemon eucalyptus oil rather than lemon AND eucalyptus.
Your sister is lucky to have such a caring sibling looking out for her!
Thank you @CosmicHobo for taking the time and interest to reply. I wish you well. Warm wishes Willow x
Thank you @Duncan for your kind words and advice. We are an interesting family. My sister and I are identical twins. I was diagnosed with myelofibrosis thirty years ago and my sister was diagnosed with Essential thrombocythemia (ET) last autumn. Our mother also has Essential thrombocythemia (ET) diagnosed when she was in her seventies. Interestingly my mother is JAK2 positive and my sister and myself are CALR positive. Our haematologist says she has never come across a family like ours! Warm wishes Willow x
That sounds so u comfortable @Willow!
Really interesting reading the responses. It seems quite common.I hope the bites ease quickly X
Oh wow, @Willow, your family really are interesting! 3 of you so close genetically with these blood disorders which are supposedly not hereditary?! So sorry that your mum has also got an Myeloproliferative neoplasms (MPN). Haven’t heard of CALR, I imagine it’s a gene mutation like JAK2? I’ll have a read up on it. I actually asked to be tested for JAK2 after my closest relative genetically was diagnosed with a similar Myeloproliferative neoplasms (MPN), and yep I have the same gene mutation. Apparently it’s more likely to be due to an environmental cause, although I have no idea what in our home town could have triggered the same rare gene mutation to affect 2 of us Maybe further research should be done on families that share these non-hereditary disorders!
I have to carry an epi pen about with me, because I’m allergic to wasp venom. I’m diagnosed with hairy cell leukemia, and have recently finished chemotherapy.(Cladribine) I’m currently in hospital severely neutrophinic, but that’s getting off subject. I just wondered if anyone has had to use their epi pen,after chemotherapy.
Thanks and stay safe David
Thank you @Duncan for your reply and interest in my family situation. Yes, the CALR gene is similar to JAK2. My haematologist explained that we are not born with these faulty genes but something unknown causes them to be ‘switched on.’ She was fully expecting my mother to be CALR positive like me and my twin sister but she was JAK2 positive instead. Interestingly my mother was diagnosed with Essential thrombocythemia (ET) just a few months after my father died unexpectedly and I have a theory that the shock of that have been the cause. Who knows why I developed myelofibrosis at the age of 35 and yet my twin sister was diagnosed with Essential thrombocythemia (ET) at age 65? There is still a lot to discover about these Myeloproliferative neoplasms (MPN)’s. I wish you well and your close relative also. Willow x
Thank you @DavidJohnSmith for sharing your story. I am so sorry to hear all you are dealing with at present. Although my sister’s insect bites have been troublesome and a lot worse than she experienced before her diagnosis of Essential thrombocythemia (ET), I am pleased to say she hasn’t needed an epi pen. I wish you well and hope your neutrophils recover. Willow x
I am also Jac2 positive Essential thrombocythemia (ET), and on hydroxycarbamide. Until this year I’ve had to have many courses of fluclox due to insect bite reactions. But this summer I’ve been using insect repellent bracelets on both wrists and ankles and I’ve been bite free!. The bracelets are 100% natural with citronella, lavender etc. Got them on Amazon!
Thanks @MaryT interesting, I have never heard of the wrist and ankle bracelets, thanks for your experiences.
I hope that you are keeping well and looking after yourself.
This is such great news, @MaryT! Long may the bracelets work so well!
Some relevant information for folks, especially those with type O blood, who frequently experience mosquito bites: Expert breaks down mosquito bite myths and facts - Futurity
Thanks Erica, up and down but basically in a better place now
I hope they continue to work for you @MaryT. It must be a relief!