Experiences with

Hydrea

I asked my doctor if we could try a small dose of Hydrea maybe 500 twice a week to see if this will lower my HCT so I can go more than 2 months without a phlebotomy.

My platelets never went below 495 on Hydrea. Lots of side effects, mostly gastrointestinal, and lost 30 lbs. that I didn't have to lose. Found an MPN Specialist in another city, and went there for a consultation.

Have been on Hydrea 2x500 a day. Have been feeling very ordinary of late… overwhelming fatigue, joint pain, the bloating and abdominal discomfort most unpleasant … I was feeling generally “crap” as I told my GP 3 weeks ago.

I cannot take the Hydrea or Anagralide. Thanks for your feed back

Gotlib at Standford) just informed me that I could be eligible for this trial because I have an intolerance to Hydrea. I've been doing some research on it and I was hoping I could find someone currently in the trial. Thank you

I'm currently participating in the INCA033989 CAL-R antibody trial but also on Hydrea to try to control my platelets. My platelets are still around 1.8 million.

I would love to hear feedback about starting Hydrea. I am anxious because i love to be in the outdoors. I have already had a lot of sun exposure in my life and it will be hard for me to avoid it now. I am also worried about the potential tiredness and nausea. Any feedback would be great!

I have been treated with Hydrea 500mg a day since January of 2021. My bone biopsy that year indicated ET/Jak2. I am seen at a local hematologist here in Alabama but I go to MD Anderson to see an MPN specialist annually.

Or had side effects from Hydrea or Anagralie?

I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now that I'm on Anagrelide (0.5mg twice a day) my platelets are in the 600,000's and I seem to tolerate it ok. However I deal with rapid heartbeats, headaches, fatigue, mood swings and dizziness.

The results of my blood counts from January to February showed that with the increase in hydrea and lowering of red meat, my haemoglobin and hematocrit went down significantly. My tastebuds haven't been the same since starting hydrea last year.

I have ET JAK2+ diagnosed six years ago and been on 500 mg Hydrea which has kept bloods in normal range and haven’t had headache problem till now. I saw the Nurse practitioner at my GP’s a week ago and prescribed antibiotics as it was thought might be sinus inflamed.

I'm about to be changed over to Pegasys from Hydrea, and also about to have cataract surgery. Some of the things I've read seem to indicate that may be a problem.

I am on Hydrea and all blood counts are now normal. My usual activity has included a lot of bicycling, often long hilly rides (50 miles or more) and multiple days in a row. I asked MD if there was anything that might make me feel more tired than in the past (e.g.

My current hematologist said she does not recommend Hydrea for this reason. Anyone else with ET have this pattern? My searches on this subject led me to 2 possibilities, one having to do with Vitamin D and the other possibility is that heat can cause lower platelets.

Hello, while on Pegasys do we still have to avoid or minimise sun exposure like on Hydrea? Or that's okay to hike in sunny days ?Just wondering as I live in Australia where most of the year is really hot and sunny. Thank you

Now, because of my age(41 yrs old) want to put me on Pegasys but with a starting dose of 135 mcg/week and 500 mg Hydrea/day. I have read that must begin with a lower dose of interferon because of the adverse effects. Now platelets have reached 1200 because the reduction of Hydrea.

Stopped weekly peg injections is when sick feeling started and 9 months later I switched to Hydrea and have slight improvement in how I feel but not much. Platelets hovering between 550k and 625k. 10 years ago I felt mostly fine and had no weakness when platelets were 1.8m.

Hello All I'm 63 years old and I have polycythemia vera,the doctor suggested that after 13 years of hydrea to start treatment with pegassis. What do you think? Does it have side effects? What problems have you encountered in treatment with it? Thank you

I had to go on Hydrea. Checked with an MPN specialist. He confirmed it was the best option for me at the time. It started well. My platelets went from 960 to 330 in 1 month. I have been on it for 2 months now. However, I am having chest pains and shortness of breath.