Anyone else find the side effects of Hydrea 500MG frightening?

@mjervis Before I started taking Hydroxyurea I hardly ever got colds or got sick. But this year I got 2 colds and I got and I got RSV. I go to the fitness center 7 days a week and exercise and use the weight machine. For my ET my doctor has me taking Hydrea as follows Monday, Wednesday and Friday I take 2 Hydrea and the rest of the days I take 1 Hydrea 500 mg a day. So for they went down I go every 3 months to get tested. Good luck with ET and stay active.

Greetings! It has been very eye opening reading the many comments regarding Hydroxyurea. I was diagnosed with Thrombocythemia in 2021 with a platelet count of 800+ at the time. In the years since then up to this date my platelets slowly increased each year and are now at 2200. I had a bone marrow biopsy in 2021 and no cancer was detected at all so I was given Hydroxyurea and told to take an aspirin daily. I started taking the Hydroxyurea at twice a day and immediately I had constipation and a change in skin color mainly on my forehead first with darkening patches and nausea just a little. So, I stopped taking it because I did not want to be constipated, feeling nauseous daily and have my skin look considerably ruined. I researched natural ways to lower my platelet count and it went down for a while to 2000 and now back at 2200 but it never seems to go above 2200 and I'm 64 years old. I eat very well, 5'2" and 124.5 lbs and have weighed the same thing for about 45 years. I am just willing to take my chances with certain herbs, taking the aspirin daily and just maintaining a healthy lifestyle and trust in GOD to help me to be alright. I refuse to take a medication that is highly toxic to skin and cells as it states in the description of the medication when I looked it up. I have lived a wonderful life so far and when it's time, it's time and that's how I am approaching my life at this point. The Spirit never cease to exist and death is a transition to everlasting life outside of this physical realm. I applaud all of you who have taken Hydroxyurea and are managing very well. It's been 5 years and counting and no heart attack or stroke so far and so good. Thank you for reading my comment and I wish every well and a happy healthy life for the future.

@anahata1962 Just so you know, there are other drugs you can try for ET besides hydroxyurea if you are inclined to seek further treatment. My dad also had ET and did quite well with anagrelide. I think there are others here who prefer it over HU.

There are also Jakafi, Pegasys, and Besremi. Just info, no judgment intended.

I think it's a healthy part of aging to accept that we all have an expiration date and try to face it with confidence and grace.

I was diagnosed with ET about 1 year ago. My number started at about 850K, then went up 987K. After several increases to 500mg for a 4 days a week and 1000mg for 3 days a week, he said, "Your body is being problematic." Finally, my number got down to 440K, 2 weeks ago, after upping me to 1000mg a day for the last 8 weeks. My routine is to take the HU with an open spirit, so I say to myself (every morning), as I hold the pills in my hand, "These are my friends. Open, welcome, and receive them." Fear and resistance will increase the body's resistant to the pills and receive them as a potential enemy. They are my friends, for they are my partners in my health care and the best possible life I can have. I'm 76 and still go to the Y 2 days a week to work on 12 weight machines and walk about 8/10ths of a mile. My only secondary impact of the medication is fatigue that causes me to take 1-3 naps a day; but, they're only 10-15 minutes long. Otherwise, all is good, so far. I hope it goes as well, or nearly as well, for all the others and you.

@nohrt4me Thank you for your reply. Anagrelide has been discontinued I an aware of. One of the major side effects of Anagrelide is rapid heart beats and I have a mitral valve prolapse so I decline that choice. One thing I found that inhibits platelet aggregation is cloves and ginger, so I am making clove and ginger water and drinking daily. I am also going to donate platelets to the Red Cross which I found out I can do. Medication is something I have always been completely against and as I stated. I put my trust completely in the most high for guidance and so far so good. Take care and be well!

@anahata1962 I have mitral valve prolapse also. My cardiologist rejected that as a good choice for me because of that.

Moot for you if you choose to take no meds, but anagrelide has not been discontinued. Some years ago there was a disruption in supplies of anagrelide, and some patients went on other therapies.

Michigan Red Cross will not use platelets from ET patients. Perhaps different in yr locale. If so it would temporarily bring down your platelet count.

I’ve been on hydroxyurea for 3 mos. My platelet count was in normal range at last blood draw…from 932 down to 393. (I take 500 mg daily). One thing I changed which has helped, is to take my medicine at night instead of in the morning. The first few weeks were pretty rough…nauseous, itching, constantly exhausted and sleepy all along with dry mouth and last and least importantly, my curly hair totally uncontrollable..dry and brittle. Lol. I haven’t notice any substantial hair loss at this point but am opting to not have my hair highlighted any longer hoping that will help alleviate any possible hair loss. After 3 mos I’m having a couple of normal days then totally crash from exhaustion, sleeping a good part of the day, then all night. My energy level drops to where normal tasks and exercise are almost nonexistent. I’m hoping that my counts at my next appt will be good enough to lower the dosage of meds.

@nohrt4me Thank you for your response. When I research the side effects of Anagrelide its a no go for me. I have maintained this body of mine very well and at 63 about to be 64, the only said issue I have is high platelets nothing else. Just had blood drawn which I do every 3 months and everything else is exactly the way it should be. These days life is good for very physical and energetic and I'm just going to keep doing what I'm doing and I FEEL I'll be just fine. Take care and be good to yourself.

Hi @anahata1962 ,

You did better than I did about even trying Hydrea. The dose my O/H was prescribing for me was so high, 500 mg twice per day, and I read about all the side effects. I am 5 feet 2.65 inches tall and weigh 106 pounds plus or minus one and have weighed that since I had my daughter almost 35 years ago. That O/H diagnosed me with ET January 2025 and changed it to PMF February 2025. I have CALR1 mutation and no symptoms still. I choose to keep my own healthy lifestyle and forego taking any medications. I have never had a clot, have no enlarged spleen per CT scan, and take my BP each morning five days per week as I do have very high systolic measurement at doctors’ appointments since being told I have blood cancer. Now my new good primary doctor as well as the decent one I finally got after a bad experience when I first took a Medicare plan say I have White Coat Syndrome which is very true. They do not advise me to take any BP meds as my diastolic BP is actually low, often in the 50s and sometimes low 60s. I will be seeing a new O/H who is an MPN specialist next month in July.
I am thankful to God that I feel very good with lots of energy at age 66 almost 67 and honestly consider myself very healthy despite my high platelets that range from 800 to 1200. As you wrote, God will call us home when He is ready for us. Until then, I lead my life as I always have and do not dwell on what I might or might not have.
I wish everyone on this forum well and respect their decision to do whatever they feel is best for themself.

@anahata1962

Wish you succeed in reducing high platelets in natural way and appreciate your positive approach towards life lived in fullness as we all travellers on this beautiful earth for a certain period . Me even 65 year old male , living in mumbai , india , daily go for morning sunrise walk half hour and swim half hour and no side effects of hydroxy for last four years except for fatigue occasionally which not there if exercised regularly , remained stress free and wise eating of healthy vegetarian food but in constant search of some natural way / food / herbs so that hydroxy be removed . My platelets around 700 and taking one hydroxy every day and a ecosprin 75 mg daily too . Feel there must be some herbs / food which can remove hydroxy which we should try and search / observe ourself and share with all if succeeded . Wishing happiness to ALL