What are most common side effects when starting HU (Hydroxyurea)?

Thanks. I’d appreciate knowing how it went for you.

Glad your BMB didn't hurt & you got a better diagnosis. Mine was very painful & I bruised really bad. I'm a red head so pain meds affect me differently. They used an entire bottle of lidocaine & I still felt it & had cramping in the area for a couple days after.

👍

Hi,
I think it is a good idea to have a Bone Marrow Biopsy before treatment also. My O/H thought it unnecessary, but I asked for it to define exactly what I have. I was lucky my Senior Advantage Kaiser Plan paid for it I guess. But it showed I might “be transitioning from prefibrotic Myelofibrosis to Myelofibrosis” and not have ET. I have CALR mutation and still no symptoms, thank God. I have strange results on my blood labs I know. One thing constant is high platelets, so I take baby aspirin now. At first, O/H told me not to baby aspirin but to take only Hydrea twice per day which I never filled or took. Then she decided I could take baby aspirin. Honestly, the BMB did not hurt at all and I was not sore after. Our family did our evening walk together that evening as usual and all our usual exercise the following days. My lab on BMB day was the only one super strange time my lab showed low hemoglobin, high white cells and platelets high but almost 400 lower than first time measured two months earlier. My recent two labs have shown normal hemoglobin, lowering but still high white cells, and high platelets but not quite as high as first day measured measured in December 2024 when this blood cancer journey unfolded.
It will be interesting to hear what my O/H says in four days at my second appointment with her.

Dx of MPN Myeloproliferative disorder ET Essential thrombocythemia
JAK2 positive in June 2024. I am allergic to blue and green dye, hydroxyurea 500 mg ordered daily. The capsule is green and pink. I attempted to take it with Zyrtec for one week and broke out with a rash on legs and arms. Long story short, it comes in a white tablet that medicare initially denied but then an approval with copayment of $1000 dollars and it could be compounded by local pharmacy for same cost. My research indicates it comes in a white capsule but I was unable to find the supplier or cost. Pharmacist said to open it and put in applesauce and swallow. With all the warnings not to open the capsule and my own concern to expose my mouth and esophagus this was not an option. After joining a face book group with ET, it was suggested to purchase gelatin capsules and transfer contents. I put on gloves, a mask, and over a paper towel I remove the green part and put the drug and pink part in the gelatin capsule. I transfer enough for one week. Since this is a lifelong treatment I would like to ask if anyone here has this drug in the white capsule?
If so, who makes it? Thanks

Thanks for the words of encouragement. I will carry on and keep your good wishes in mind while I go into Zen mode during the procedure. The best case for me will be a hospital visit with sedation. I will keep you posted.

After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done right at the cancer center. An experienced and sympathetic person tried three times but was unsuccessful in getting a specimen. Although the area was numbed, each try was very painful, but I wanted them to keep trying so we’d have a definite diagnosis. I had a fourth biopsy in the hospital where I was sedated and they could use special equipment; that effort was successful and we knew what we were dealing with.
While the pain of the first three tries was extreme, it was short-lived with no adverse results. I’m glad we followed through and could better understand my condition (myelofibrosis). I’ve been on hydrea for almost a year (500mg daily) and continue to live an active and fulfilled life, enjoying my volunteer work, travel, and family. I’m 83.
Try to go ahead with this biopsy so your doctor can know for sure what direction to take. A few minutes of pain is worth the knowledge gained.
Please let me know how it goes for you - I’ll be rooting for you to be strong. You’ve done harder things, I’m sure, and you can do this.

I was given the option for a bone marrow test and did some research and decided against it. I was diagnosed with PV 1/22 from my labs and confirmation from JAK2 positive. The labs determine your medication and dosage and I was told that my treatment would be the same no matter what the biopsy showed. If my health declines and my numbers change, then I’ll reconsider. I do understand that some patients need that confirmation from this test due to the shock of their diagnosis. I had a few thoughts. Will it change my treatment? If the Doctor is comfortable with me not doing it, I should be too? And the cost was also a consideration. Even with insurance, it would be very costly. PV causes me to meet my deductible every year now in the first few months with phlebotomies, doctor visits and labs. Ask the right questions and do some research on reputable sites. You have to do what makes you comfortable.

I agree even though it sucked, lol, Im glad it was done. It ruled out leukemia & reassured me that I had no other mutations. I was diagnosed last year at the age of 47. I can't take HU due to having an allergic reaction within 1 hr. of taking the 1st. dose. I only take a baby aspirin. My levels usually stay between 630 & 750. Due to my age & that Ive never had a blood clot, they are not too concerned at the moment. I go for labs every 3 months to monitor.

I have the same opinion and have already messaged my doctor to schedule it.

Thanks