How fast do you start to feel hydroxyurea symptoms?

Aloha MLMK,
I too was quite freaked out when I read what HD addresses … CANCER?!! What?!! I have CANCER?????
I made an appointment with the DOCTOR (not assistant) to better understand the condition, options and possible side effects. I’m 71, on one 500mg pill per day. My count went from 1000 down to the 500s rather quickly … one year later (now) I’m on 6 pills per week (I have one day off). I have occasionally had hot flashes. I thought it was a side effect of the meds, but have heard it’s a side effect of the condition—so not sure which is true, but they’re not that big of a deal. Some times my shins feel like they are sunburned; it goes away within like 15 mins. Twice if had a incredible itch…at my elbow and ankle. Don’t scratch till it bleeds, like I did! Get some itch cream. But I only had two incidents of that so who knows if it’s really a side effect. I’m sleeping longer but don’t really feel fatigued during the day—so maybe this is my system’s way of dealing with fatigue? Not sure. But sleeping 8-10 hours now (used to be 6-8). I’m feeling much better about the med. It is the lowest dose possible. It seems quite effective. I’ve read a lot here on this support group of others having good results and that is assuring. I travel a lot so I keep my flights to 5 hours or less. No more direct flights for me—but that’s a small price to pay for my health. I’ve got lots of living to do yet because there’s much to be done! I wish you well and stay in touch with this group—it’s a nice bunch of people! With Aloha, jd

I am 73 years old. My brother also has essential throbocytosis because we inherited the same mutation called the JAK 2 gene. My blood platelet count was up to 1 million 2 years years ago. My blood platelet count is now 413. I take one 500 mg. tablet 5 days a week and 2 tablets on Monday and Friday. I found I do better taking Hydroxyurea at night due to it making me drowsy during the day and it makes me rather clumsy if I take it during the day. I have taken two other medications for decades for clinical depression that occured after my childhood kidney disease returned.

My hematologist at University of Chicago Hematology and Oncology stated again, and again, and again and again to me that essential thrombocytoces is not cancer. I needed to hear that.

I think side effects are lessened a bit if hydroxyurea is taken at bedtime.

I think it is a fine idea to have someone stay with you the first week. You will feel a lot more secure.

Wishing you many blessings.

My numbers were similar to yours when I started a year ago on HU at age 69. I was scared to start the hydroxy (HU) too. The first month, I took it 1x week for a month with no change in numbers. At 2x week, the platelets came down a bit, but still over 500K. A year later, my platelets were back up in the 700s with HU 2x week, so I went to 3x week. Platelets are still increasing, so my oncologist thinks it is time to go with daily HU, 500 mg I compromised at 4x week for the next month, then more blood work next month. Fatigue has been my biggest side effect, so I try not to schedule activities for the morning. I also have dry eyes and dry skin. I use Systane Ultra Eye Drops and Cerave Skin Cream. I also take 1 baby aspirin daily and one iron daily. I have low iron but not anemic. All of my blood work looks good save for the platelets. I came into this illness with no symptoms. High platelets were picked up at my yearly physical with my FP. Remember, with HU you need to wear protective clothing or stay out of the sun as it puts one at higher risk for skin cancer. I don't like that I have to take the meds, but I don't want a stroke, clot, or heart attack. I follow a vegetarian/Mediterranean type diet and try to keep up with my exercise. I also keep myself distracted with hobbies, family, and friends. Wishing you the best as you start this journey. Sending hugs!
Karla

I am 63 and have been on HU for 3 years. The only side effect I have experienced is a slight fatigue and pain in my hips for a few days after beginning the drug. I do have some skin issues to my lower extremities ( red dots) like Petechiea. Other than that all is good. I take 500mg daily for 5 days. I wish you the best.

I have PV. Diagnosed 1/23 and am 57 years old. I had sore gums and tooth pain when taking it daily. After my dosage was reduced and months passed by, that went away. I also am very sensitive to the sun and can feel my skin burning through my clothes when outside. Just taking it 3X a week now and the symptoms have all but disappeared. Hang in there!

Welcome to Connect, @barbweav Thank you for sharing your positive experience with Hydroxurea. No one wants to take meds daily but when they can keep us healthy and avoid potential issues with too many red blood cells, or for others, too many platelets, the meds become life savers.

Did you have any symptoms leading up to your diagnosis of PV or was this found with routine blood work?

Routine blood work

I'm an active 84 yr old female diagnosed with ET 2 years ago. My platelets rose to about 800,000 and I was hospitalized with multiple pulmonary embolisms. My Hemotologist started me on 500 mg HU daily. My platelets dropped to 240,000 quickly. I experience NO side effects. I truly believe if you are looking for side effects you will have them. The power of suggestion can be strong. Believe me you do not want pulmonary embolisms!! Take your medication and move on with your life.

Welcome to Connect, @mib. It’s good that you found out early that you had ET prior to having any symptoms with too many platelets. I’m happy to read that the Hydroxyurea is working well for you to keep them in normal limits.

How often do you need followup appointments?

Three months after starting HU I developed a very itchy rash and had a fever of 104. Took about three months to get better. I’m taking Jakafi now with no problems after three years.