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

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.

I was just diagnosed with ET. Platelet count 1 million.
Test results still coming in. I see my hemonc in a week.
Guess he’ll prescribe hydrea…

After asymptomatic high platelets in the 600 range, a bone marrow biopsy revealed JAK2 and I took Hydrea 500mg daily. I immediately experienced throbbing headaches, including four migraines, and developed debilitating fatigue and lethargy. After three months, my platelets had dropped into the 400 range but I needed more energy to train for an upcoming wilderness backpacking trip. Because I am at low risk other than age--71--for clots, my hematologist OK'd stopping hydrea unless platelets approached 1000.

I felt better soon after discontinuing Hydrea, with more energy, less brain fog, and fewer headaches, and had a fabulous week in the wilderness. At recheck last week, after two months off Hydrea, platelets were 628 and all other CBC and blood chemistry values were normal. The hematologist suggested trying 500mg Hydrea 3 days weekly which I'm considering with much concern based on the side effects I already experienced and others listed for this drug. I'm also considering getting a second opinion and asking about other treatment options.

Each of us must come weigh our own conditions, risks, and considerations about quality of life when deciding which treatment is right for us. Best of luck in finding the best care and treatment for your blood disorder!

If you are reading the package insert, I assume that means you trying to be an informed patient. However, the information in the package insert is part of the story, but it is not the whole story. Most package inserts list side effects, but they mostly do not list the probabilities of those side effects. Without the probability of occurrence, you really can't know what the risk is.

In project management, there is a discipline called risk management. We judge risk by multiplying probability of occurrence of the risk by the severity of its consequences. The most severe risks are the ones that are likely to occur and have severe consequences. A low risk would be one that is not likely to occur and the consequences are minimal. In the middle you can have combinations of high probability but low severity, or low probability but high severity. You don't have to make this judgment because your doctor already has done it.

The package insert can be useful if it raises an issue that maybe your doctor is not already aware of. For example, if there was a contraindication to taking the medication because of a condition that your doctor didn't know you had, that would be a reason to talk to your doctor about it.

I have a different type of blood cancer. I have had a lot of medications. At one time I was taking 38 separate pills per day. It was a challenge just to coordinate all of them to take them at the right time, with food, without food, etc. I have never really worried much about side effects of medications because I knew that they were needed so that I would not die.

However, I have had fear of other things that caused me to hesitate before jumping into a course of treatment. I understand fear. One of the things you can do is ask your doctor to explain the risks and benefits of taking the medication. I think that he or she would be interested in knowing if you have concerns about the medication.

I once asked my doctor what I could do to increase my chances of survival. He said to do two things: 1) keep all your appointments, and 2) take the medication.

Three years ago I was diagnosed with AML. Since that time I've had six different types of chemo drugs, antibiotics, antivirals, antifungals, a bone marrow transplant, immunosuppressants, and others. I am still alive today.

If you have a concern before starting the medication, talk your doctor. If you start taking the medication and have a further concern, talk to your doctor about that. That seems like a rational course of action that I think would serve you well.

I’ve been on Hydroxyurea every other day since last Nov. On my “pill days”, I feel a little more tired and get a headache if I don’t drink enough water. Very mild symptoms if any. The drug companies have to list all of the dire side effects due to legal liability. I’m more afraid of a clot.

HU x 5+ years. No side effects to speak of. Less fatigue after I started it.

HU side effects are overstated, and there are a lot of fear-mongers out there. Ask doc to start you on lowest dose possible and work up. Drink 60 oz of water throughout the day, wear sunscreen, and don't handle pills without washing hands. I tip my caps from bottle into paper pill cup. Easy peasy.

I suspect some patients resist taking "chemo" because it means facing up to a cancer diagnosis. I felt that way a bit, and I took a week off work when I started HU because I expected horrors. None of my fears came true.

If you are freaking out about HU, ask about alternatives such as Pegasys or Jakafi. If you have PV, insurance might pay for those. It won't for ET.

Also: If you have kids at home, straighten your spine and be brave about taking care of yourself, including taking the meds the docs recommend. If they develop an MPN later in life, you will have modeled courage under pressure instead of denial and fear. Dad had ET, and his experiences and attitude really helped me.

HI
The only side affect I have had is tiredness, I avoid sitting in the sun you also have to remember 550mg per day is a very low dose. I have ET Jak2 and chronic myelofibrosis. I am 67 enjoying life embracing my diagnosis tying to lose some weight and living. Remember stress is a killer - people have been on Hydrea for may years Good luck and come here for support!