Hydrea

[Scrollernut]

Have ET only since February so still in the ‘trying’ stage. Started out with 500/mg every day and in two weeks count went down from 586 to mid 200’s so we went to every other day. Count still down BUT dealing with extreme fatigue and nausea so we decided to try only aspirin for 3 weeks. Go for a blood draw next week so hoping counts are still good so no meds. Have decided to be VERY careful with diet for fatigue which I had before. It just got worse on Hydrea. And have decided to start an excercise program designed for seniors to see if that also helps. As far as nausea....hopefully it’ll go away without meds but I did read that cancer can cause Dysphagia which is ‘gagging, coughing, or vomiting of food as you try to swallow’. That’s up for discussion as well next time. Hydrea is suppose to be the best but ...... . Anti nausea pills and careful eating habits are suppose to help. Good luck with making a right decision for you. Everybody reacts differently.

[hunter5582]

Hope you get some relief ASAP. Discontinuing the HU should eliminate the side effects you are experiencing within a few weeks. You are 100% correct that everybody reacts differently and you do need to make the right decision for you. You already know that while some consider HU "the best" - I would not be among them. Of course, I am HU-intolerant so there is some degree of subjectivity there,

Would suggest reviewing the other options with a MPN-Specialist before deciding to resume HU (or deciding not to).

As always - all the best my friend. You will be in my thoughts and prayers,

[Scottishterrier]

I have ET Jak2+ i have had 3 blood clots to the liver i to suffer fatigue and nausea but my consultant said if possible try and get a sleep in the afternoon and for the nausea i was prescribed domperidone 3 times a day they work wonders but i have never regretted the decision to start taking HU and under a great heamtologist and also gastrointestinal consultant who keeps an eye every 6 months on liver function but count my blessings it was in the liver as it is the only organ in body that regenrates itself

stay safe

Scottish Terrier xx

[Scrollernut in reply to Scottishterrier]

Thanks my Scottish friend. Are you from Scotland or just love Scottish terriers? My husband and I visited Scotland several years ago for 2 weeks. LOVED IT! I think I was a Scottish lass in my previous lives!!!!🤣

[Mollymag2 in reply to Scottishterrier]

You're the first one I've heard describe symptoms of the drug. I'm so sorry that you've had such a severe reaction. Did the reaction begin when you first started the drug or later. The possibility of clotting is what was made me realize the seriousness of this disease. So far I've been fortunate not to have any side effects, but I realize that things can quickly change. I'm glad you are getting some relief from yet another medication and appreciate your post. My best to you.

[Wyebird]

Welcome, it’s still early stages for you. Even if I tired I make myself exercise. It’s a fine line. I have just learnt after over 4 years how to pace myself. I give in for a day or two then kick myself out of the house to the gym. I feel so much better for doing it. During lockdown I concentred on the jobs I’ve put off, cleaned out cupboards and the attic.

When taking the dogs for a walk every day i power walked a mile a day