Hi, new to the forum but not Essential thrombocythemia ('ET'), diagnosis was confirmed Jan 23. I’ve been on Hydroxycarbomide since, with increasing doses. Body coping well , maybe too well as dr doesn’t want to increase further (1000mg on 5 days, plus 1500mg sat & sun) but platelets still not 100% managed. I’m JAK2 positive Essential thrombocythemia ('ET'). Dr wants me to switch to Peginterferon alpha 2a, and - like the original poster - reading the common side effects scares me, in particular the MH . Over the years I’ve not had the best MH - at times it’s been pretty bad - with different therapies and drugs used in the fight, however I feel like I have been on top of it recently. Also my hair. I feel if my hair goes I might lose some (a lot) of my identity, which sounds ridiculous when I say it out loud so I haven’t admitted that to anybody. It’s not like I’ll be stopping the meds, as we know Essential thrombocythemia ('ET') is for life!
Hello, good to hear from you. I, too am JAK 2 positive, diagnosed with Polycythaemia Rubra Vera 8 years ago. I have been on Hydroxycarbamide since then - same dose as you except that it’s 500mg on a Sunday and 1000 mg every other day. It has kept me well. My hair is thinner but it’s still there! Get tired but I am 82! They muted Interferon but I agree with you that the side effects don’t sound good and my theory is, if something is working leave alone. I guess you may gave to keep going a little longer to get your blood levels where they should be. Stay positive, it helps.
All best wishes & prayers
Pauline
Hello there @Nana_Sue, welcome to the forum. We were both diagnosed with Myeloproliferative neoplasms ('MPN') in 2023, it would seem, so I’m glad you’ve found it here too.
May I just say it’s really heartening to read how your body has been coping with both the Essential thrombocythemia ('ET') and hydroxyurea. I’ve taken hydroxyurea since diagnosis with Polycythaemia vera ('PV') and have had its dosage adapted to find one that best slows down my blood cell overproduction. I’ll share the Blood Cancer UK information about Essential thrombocythemia ('ET') here in case you haven’t read it: Essential thrombocythaemia | Blood Cancer UK
By “MH” I’m guessing you mean mental health and I’m sorry to read that yours has been affected previously. I appreciate how our mental as well as physical health needs looking after, especially when living with Myeloproliferative neoplasms ('MPN') I’d say, so I’m really glad you’ve been able to get on top of that. No mean feat! I’ll share here the BCUK tips about looking after our mind and emotions in case there are suggestions you might not have tried: Blood cancer: mind and emotions | Blood Cancer UK
I think you’re wise to be wary of how changing to Pegylated interferon alfa-2a (such a catchy name!) might affect you. You’re not alone in living with Essential thrombocythemia ('ET') and having variable mental health as I know of other lovely forum members who have described their moods being affected by interferon.
Perhaps having a look through this thread full of forum members who live with Essential thrombocythemia ('ET') might offer some ideas of what to expect from changing treatment: ET diagnosis finally sinking in
And you know, the specialist Blood Cancer UK nurses really know their stuff and can advise on the medical side of changing treatment, including other resources that can help you decide. Their free number is 0808 2080 888.
Hope that helps a little @Nana_Sue, maybe have a further look around the forum using the search box at the top, and please keep us posted about how you get on.
Hello there @Lucydoo, welcome back to the forum. Thanks so much for your supportive comment to @Nana_Sue, it’s helpful to hear how you’re getting on for those of us with Polycythaemia vera ('PV') who have taken hydroxyurea for a long time, like myself. I’m sorry to read of it affecting your hair, but I love your attitude—if I reach 82 I’ll be happy to have stayed well like you!
Do have a further look around the forum @Lucydoo as there are many new members living with Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') who I’m sure would also be grateful for your wisdom.
Thank you for your lovely reply 
Thank you for your lovely reply ,
Thank you for your lovely reply , I’ll be updating after my next appointment. I’m going to try to stick to Hydroxycarbomide, at least I know what I’m getting.
You are most welcome @Nana_Sue, and I’ll look forward to reading how the appointment goes.
Just to add, reading back you saying you’ve taken hydroxyurea since January reminded me that it took a while for my dosage to fully take effect and slow down the blood cell overproduction, maybe a good year and change. It wasn’t until I saw my blood cell numbers reducing via the many blood tests that I began to trust the hydroxyurea was really working. Sounds like we have almost the same dosage now, which my haematologist calls mild. I’d say none at all would be milder still, but I trust his judgement!
Anyway, stay well @Nana_Sue, glad you found the forum!
Hi @Nana_Sue
I was the opposite to you, I was on interferon and then my Haemotologist wanted me to go onto hydroxy which being chemo and my age I really wanted to avoid at the stage of life.
As long as you are mentally sound you do have a right to stay on the medication you’re happy with.
Though before rejection I would ask what has prompted the change, how will the new medication help, how proven is it in your given situation. I would have a friendly chat with your clinical nurse and share you anxiety and fears first as they maybe able to translate what the doctors reasons are in a different way or present your case to your doctor to come to a compromise. Experiences of medication differs from patient to patient. You are also entitled to get a second opinion from not just another specialist at your hospital but any specialist. Your clinical nurse can sort that out or guide you how to do this. I did this and feared that my specialist would think I didn’t trust or believe him or treat me differently. I saw it as getting another quote or seeing what others were offering before committing to a recommendation.
I’m a strong believer of a gut feeling but once I’ve been informed of the pros and cons and if gains are worth the risk.
Please do not read this as going against medical advice and definitely speak to your medical team or the amazing people on the Bcuk support line, but I’m just saying that it’s good to advocate for your treatment/health journey.