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

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

Thanks

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.

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.

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

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.

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 sharing. I as wondering what questions you would ask, and what sites you recommend for research.

I can’t recall where I looked it up. Mostly hospital sites. My main question was how will the results affect my treatment? If they are using our monthly labs to dictate which meds and how much to take, I asked
Why is it necessary? Basically he told
Me straight forward that the test would not change my treatment. As long as I can control my hematocrit and platelets with the hydroxyurea, 3X a week now for almost two years, and phlebotomies every few months(when hematocrit is over 45) treatment remains the same. So basically they give you the choice for final confirmation of the disease. I’m JAK2 positive and diagnosed with PV soley from bloodwork. It’s a personal decision. I was 56, NEVER sick or taking any medications, so I was shocked. But… wasn’t letting them make me go through that and pay for it also if it wasn’t going to change anything. Every person’s situation is different. Speak to your doctor and think on it.

In my opinion, a bone marrow biopsy is crucial to determine if you have any other issues that could change your diagnosis or affect your treatment options. Don't let the term cancer scare you - or let the fact that HU is a chemo drug deter you from treatment. Most of us diagnosed from ET will live a long time with it and HU is very effective in managing this disease. Yes, there are side effects but if you read the patient information sheet provided with any prescription medication you'll see scarey side effects there as well. I was 68 when I was diagnosed two years ago, have been on HU ever since starting at 500 mg 2x daily 7 every day and reduced to 500 mg 2x a day, 4 days a week. My only side effects were initially short (less than 30 seconds), sharp headaches and mild hair loss, both of which have resolved.