sensitive to HU ?

[catwoman2015]

Hi everyone just want to wish everyone on this forum a very happy Christmas and most of all a healthy one ! Also a big thank you to Maz and the team for all your support .Have been wondering if anyone as become sensitive to Hydroxy after taking it for a year or more ! only of late on occasions i do feel a little nauseous at times , was wondring if coukd be conected to treatment or Pv/ET .. be interesting to know mant thanks best wishes Holly x

[fee13]

Well timed for me to answer lol. I have ET JAK2+ and been taking hydroxyurea for 2 years and have felt rotten all the way through (but presumed it was just ET symptoms) until a few months ago I could not tolerate the pain in my muscles, joints, bones, lightheadedness, nausea, electric shocks in my chest just before nodding off to sleep, and other symptoms and told my haem doctor so she gave me a couple of months break from hydroxyurea. I have been alert, able to actually hold a conversation and most of my symptoms have disappeared or at least minimised. I may have fibromyalgia as small manual jobs make me suffer from aching joints and burning muscles for a couple of days after but at least it's not every day!

As of next Wednesday they will be trying me out on interferon, I so hope I can tolerate this as the other options are not suitable for me.

It's worth mentioning all your symptoms to your haematologist. It's also a good idea for them to build up a database so there's more information for future clients and research.

You have an awesome Christmas 🎄 and I hope you get the right answers 🤗

[catwoman2015 in reply to fee13]

Thank you for your reply , what dosage of HU were you on at the time ? yes im also jak2 pos and have heart. valve problems severe Fatigue etc and joint/ muscle pains which have worsened on HU all the best Holly

[fee13 in reply to catwoman2015]

Hydroxy 500 mg (started 15.10.14) once daily for 1 month, added 1g x 1 day a week for 2 months, added 1g for 2 days for about 2 years and then upped dose to 1g x 4 days & 500 mg for 3 in May this year, that's when things became unbearable. A small dose compared to a lot of other people.

[catwoman2015]

Im on just 500mg every day , hooe it never goes to anymore , like some are on 2 twice daily