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Anyone else find the side effects of Hydrea 500MG frightening?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (221)Comment receiving replies
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.
Replies to "Greetings! It has been very eye opening reading the many comments regarding Hydroxyurea. I was diagnosed..."
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.
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
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@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.