New to Hydrea for ET

I didn’t know to ask but one needs to be their own health care advocate. I wonder how long I had elevated platelets before it was discovered. Yes, lucky not to stroke out.

My platelets were high in 2015 and I was basically dismissed by hem/onc I saw at the time. Was in the 600’s. I am pretty angry that no follow up was ever done. My current hem/onc was confused by this too.

Your transition from ET to PV--was that new diagnosis from symptoms, blood tests or bone marrow biopsy? I was diagnosed with ET in June 2023 but had higher than normal platelets for years. Only taking daily aspirin since waiting for platelets to reach over 800 before starting HU. I saw hematologist/oncologist last week and shockingly was told actually might have PV. Platelets staying in 600s but WBC, RBC, hemoglobin and hematocrit are showing a trend of increasing every 3 months. Waiting 2 weeks for another hormone test results that might show probable PV. I've done a lot of research on ET but didn't know about this possibility of transition to PV. My doctor immediately ordered HU which I've just started but no discussion of other available meds.
How long from your diagnosis of probable PV did they recommend Besremi? Did HU work ok for a long time with PV or was HU only successful with your ET? This is all news to me--I was just getting comfortable at 73 to living with ET but in 5 minutes last week that all changed. There was no time for questions and I wasn't even prepared to ask questions about a new diagnosis. So back to Mayo chat research.

Regarding hair loss: I've been on HU for two months; first month was 500mg daily with two days of 1000. My platelets dropped from 12000 to 500 so my dose was reduced to 500 mg daily. I have had hair thinning. It continues to thin daily, but I started with thick hair. I can relate; this is the most disturbing side effect from HU. I take Biotin and Essential Amino Acid tablets daily. hoping it will help with the hair loss. But nothing is changing; not even my fingernails which are peeling and thinning as well. I also feel brain fog, periodic bone pain, extteme afternoon fatigue and off balance at times. I know my platelets are still dropping and I expect my next blood draw will be in the 2-300 range. I'd like to be off this drug ASAP but realize that it's what has been helping me this past couple of months. I have JAK2 with mutations TET2 and ASXL1. Dr. says I have 8-14 years of living yet to do and I'm 73. Discouraged at times due to lack of strengh to do what I used to do. I've always been active, energetic and work hard all day, but not now. I take Levothyroxine every morning (complete thyroidectomy 40 years ago) and HU at bedtime. Drinking more water would help, I'm sure. I know this isn't encouraging, but that drug is whipping me while lowering my platelets!

I’ve told my family and friends to look at their blood test histories and to ask for CBC testing if they are feeling not quite right. I did look back at my history and was getting a CBC at least yearly which did show a slow increase in my platelets. Nine months ago I was in the mid 300k range. Then in February was when I complained of severe fatigue which I’d had for several months but I thought it was due to my care of my husband who had a stroke last May. I’m grateful my primary care doctor is very proactive.

I've been on the HU for almost 19 years. And I have not had any significant hair loss like you may be worrying about. Just normal loss. For me the side effects can range from fatigue, because we are destroying all the blood cells not just the platelets. I agree you need to stay hydrated and get your sleep. Both very important. Good luck love. We are here to help. < 3

I am 72 years of age and was also diagnosed with ET in November of 2024. HU was the first drug that we tried but every side effect that was listed as possible I had even the ones listed as possible. My hair also fell out. My second med that we tried was Ang but we had to stop it because of the fact that it messed with my heart. I am on Jakafi now but I am having side effects from it now. I might have to decide if the drugs are worse than the ET

Try to take your Hydrea a couple of hours before you go to bed. Someone on this site told me and it really works, keep me from being tired. My platelets have came down to normal and dropped the last two months, I am hoping she decreases my Hydrea. I have had no hair loss, just burning feet sometimes. I love this group it has really helped me from being depressed.

Hello, sorry to hear that HU did not work. i heard it had the least amount of side effects. You may want to try another specialist.

I have always watched my blood work and I noticed my platelets went up after I took the covid shoot from 324 the prior year and 600 the year following the covid shot. I told my then Dr and she said she wasn't going to worry about it to wait until next year, well the next year it was at 700 and from there went to 900 before I could get into blood specialist well its been 6 months and now back to 264. I started at 500 and now taking 1000 mg a day. I take the medicine at night a couple of hours before bed and have not felt tired. I do suffer from burning feet and hand tingling . This is a good group to ask questions, I have learned alot more from the group and has helped me to deal with this blood disorder. I have some days where I am tired but, at 65 years old I think with this disorder im doing good, i still walk and keep active. Pray for you and your husband. I took care of husband as well after my husband's stroke.