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

Hello, I was diagnosed with PV in Jan 23. I just turned 57. Same situation with the blood counts. Platelets bounced around, on, off, seven days on hydra, then off, then five days and now on three days a week which I’m ok with. Counts seem to be good for over three months now. I had some hair loss and brown spots on my skin and even small sores and sensitive gums in the beginning but my oncologist told me to wait it out and I did. Happy to report that my brush appears to have stopped filling with hair every time, my mouth is back to normal and the spots are less. Saw the dermatologist and he said Hydroxyurea will bring up “old” sun damage from years past and to come once a year and he can burn off anything suspicious. Ok, we go on with life and just stay on top of our labs. If we think about it constantly, we will not enjoy everyday life 😊

When I got the results from my annual Medicare checkup last year my platelet count was 900k. By the time I saw an oncologist a month later it was 1.2 million. They put me on hydrea right away. I haven’t noticed any obvious side effects except for itching, although I thought that was a symptom of ET and PV as I had it before I started the drug. I can’t comment on thinning hair and dry skin either. I’m 69, and I’ve had those issues years before I started taking Hydrea.
I’ve been in this forum since then and what I’ve learned is active people have the best outcomes. I’ve got several landscaping projects going and we’re building a cabin; also things that were going before this diagnosis. It all takes longer because I take a lot of breaks, but it seems to me at least part of it is that I’m 69 years old.

My platelet count bounced around a lot for about six months before we hit the right dose and now my platelets are now consistently in the 300k range. I tap the capsules into the cap of the bottle and then right into my weekly pill holder. And daily from there right into my mouth. I do take a sip of water before I take the pills, with more water, just to get them down quickly. I never have to touch them. I feel as good as I think I possibly could at this point in my life, which is pretty good! Although I think about my blood cancer every day when I take my pills I don’t dwell on it. I treat every day the same as I did before my diagnosis, a blessing.
Like you I was freaked out by the listed side effects. Although they sound horrible, they seem to be rare. I’m way more concerned about the blood clot than the side effects. You got this.

I have been on interferon..crashed my thyroid (ok now) anagrelide caused HBP (I'm on meds now), racing heart and a feeling of eminent death (not kidding). I'm on Jakify and that is working very well but it is VERY expensive and my drug plan with Medicare pays a portion but my copay this year will be about $12,000. I've obtained a few grants but they are not available now. I wish I could take hydroxy.
PS my Hemo Dr was very careful starting me on it, she stopped and restarted hydroxy which is the protocol to make sure its a drug reaction. Suggestions are welcome

Sounds like a good question for the doctor. Was he trying to rule out the flu by taking you off and trying again?

While most people do ok with HU, some have reactions. Some patients I have spoken said they had bad bone pain, but they were given really high doses to start. Hemos seem to have better luck starting people on lower doses and working up as needed.

I hope your doc will get to the bottom of it, maybe by trying anagrelide or another alternative?

Hydroxy unfortunately did not work for me. I was not biased by thinking about side effects. I was on it for about 3 weeks, then my face swelled, I had a fever of 102, I felt like I had a severe flu. Dr took me off and then said let’s restart in a few weeks. Same reaction. I drank some, not a lot, of alcohol then I wonder if it would help now that I’m not drinking at all. .

I was diagnosed with ET and the Jak2 mutation in Feb. 2023. I took iron supplements for a month with some decrease in platelets. I had low iron but not anemia. In March, I started 500 mg of Hydrea, 1x week. I only had a slight decrease in platelets and no side effects. As of April, I have been taking 500 mg, 2x week. My platelets were 700K in January and are now 500K. Other blood work related to sticky blood and the shape of blood cells has also improved and in the normal range. My side effects include fatigue, dry skin, and very dry eyes. I use Cetaphil for dry skin and Systane Ultra Eye drops for dry eyes several times per day. For the fatigue, I drink lots of water, and take B12, D3, Iron, and multivitamins, with my oncologist's approval. I take the iron with orange juice and it also gives me energy. I avoid processed foods and try to eat healthy. I have home hobbies that keep me distracted when I am not up for going out. I always wear a mask when I go out in larger groups since chemo makes us have reduced immunity. Perhaps, your doctor will let you try Hydrea in smaller doses? My oncologist initially wanted to try me at 500mg, 3x a week but listened to my concerns and I only take it 2x a week. I'm 69 and at high risk for thrombosis, so taking the Hydrea gives me peace of mind-- and anxiety. Thus, I quilt, paint, and garden to help bring calm into my life. Take care!!

I am currently taking 500 mg Hydroxyurea on Monday/Wednesday/Friday. Headaches are less. I have ET JAK2. It is worth a try.
Eileen

I’m going on two years now on hydroxyurea (500mg) with pretty much no side effects except for one time when I dropped the capsule in my water glass but still took it after it had partially dissolved. Bad case of the itch from that. My doctor adjusts the frequency of how much I take based on my blood counts. Currently taking 4 times a week. I believe it has really reduced the number of phlebotomy sessions I have which are now down to 2 or 3 times a year.

Wow - what a response! I am SO grateful to hear from all of you about your experiences. It makes me feel much less alone!

I’ve always been suspicious of doctors and pharmaceutical concoctions. I never take any pill from a doctor without researching it first. And I’ve had some unpleasant past experiences but it wasn’t just the listed side effects that concerned me about hydrea. It was word “chemo” that made me scramble and start hunting for alternatives. I’ve lost 2 brothers, a brother in law and several work colleagues from cancer and my memories of their chemo experiences weren’t pleasant.

From what I’ve read, there’s not a whole lot i can do medically to lower blood platelets permanently because my body will just replace what would be filtered out in no time. I have an appointment with the 2nd opinion blood doc on the 10th. So I’m going to take one after supper tonight and go from there. There’s too many people depending on me right now for me to just clot, stroke out and end up laying in a hospital bed or dead.

Thanks for all the advice and support everyone!

I've been taking Hydroxyurea (various doses, depending on my platelet levels) for over 10 years with no side effects. Of course everybody reacts differently to any drug. I always encourage everyone to get a second opinion. In the meantime, I think you have to ask yourself, is it worth it the risk having a stroke or taking a medication that may prevent it? Any drug you research on the internet, including aspirin, says that there are possible serious side effects. I'm not saying Hydra is the answer for you. You'll have to figure that out with your doctor. I wish you the best in finding the root cause of your high platelets.