Hydroxyurea “Holidays” – How Long Have You Paused?

My hematologist said it I could stop hydroxyurea (500mg daily) when traveling. Last summer I stopped it for three weeks while on a backpacking trip in the wilderness. Platelets rose from 469 two months earlier to 534 soon after I got back from the hike. At my regular checkup with the hematologist two months later they were back down to 452 and were 429 three months after that.

Interested in yr gout. I attended one of those ask-the-mpn-expert programs via Zoom. (Sponsored by MPN Advocacy and Education Int'l. They put video programs on YouTube.) One of the speakers mentioned that gout and other inflammatory issues seemed to be associated with ET, which has an inflammatory component. Did doc associate yr gout with the HU or ET?

My gout has been attributed as a side effect of Hydroxyurea.

I am 78 years old and have had ET for approximately three years. , I recently have had a total hip replacement. I am anemic because of the hydroxyurea that I take which is 1000 MG’s each day. I am anemic my hemoglobin went down to 8.9 just before the surgery. Doctor said I may have to have a transfusion. Thank goodness, I have not had to have one. I am very extremely weak and lightheaded. This is because of the low, hemoglobin and being anemic. My oncologist did not want me to stop hydroxyurea before this surgery. It seems my doctor is not concerned about me being anemic. It is very debilitating and I am considering Getting another opinion. Has anyone else had problems with being anemic because of taking the hydroxyurea? Please let me know. Thank you.

I got a very tiny drop in my rbc's but aside from that I could not and will not tolerate HU as I call it the devil pill. I lost a year of my life on it having severe side effects; feeling like the worst flu everyday, my colitis came back full force which I was fine for yrs from it, severe! Weakness, pain I have that has become excerbated to the extreme and as fatigued as it made me I couldn't sleep at night even with an Ambien. I could go on and on all my other Drs PCP, nephrologist even a foot Dr I went to for a previous broken ankle all cringed when they found out I had started with HU a yr ago. They said it was a harsh drug and many people could not tolerate it. The cold hearted heartless Dr I was going to could care less about my symptoms and would try to make you think it was all in your head but insisted I would need this med for the rest of my life. I cry all the time from feeling so sick and feeling like has been passing me by. My sister and PCP kept saying to get a second opinion which I have an appt in 2 wks. It has already been 2 wks I went off the med completely and I still feel weak etc. I have CKD since I was a child and meds clear my system much slower than the average person and I found out HU goes through the kidneys for clearance . My dosages were 500mg five times a day then 3 times a week then two times a week until I got the jerk to go down to once a week. I didn't feel one but better. A pharmacist told me as long as your on the med no matter the dose you will always have side effects being the class of drug it is. My Dr went ballistic when I brought that up he will not tolerate any suggestions. I pray the new guy I go to is human with a heart. My PCP suggested this new Dr and told me he is a nice guy and a great listener. Good luck on your problem and think about a second opinion. Janet

Co-morbidities affect tolerance to HU, for sure. If you have side effects, you can try anagrelide or, if your insurance pays, besremi (interferon). However, many docs don't even bother prescribing besremi in the US because of the cost.

Some doctors are impossible to deal with, arrogant, abrupt, and unwilling to listen. Specialists can be especially stuck in their silos, unable/unwilling to see the effects of their treatment on co-morbidities.

But HU is not a "devil pill" for most people. Been taking one per day plus extra on M-W-F for 6 years (ET-CALR). No no anemia, no fatigue, no clots, only two mild aural migraines in all that time.

I hope those with problems with HU can find better docs and good alternatives. They are out there!

I got a very tiny drop in my rbc's but aside from that I could not and will not tolerate HU as I call it the devil pill. I lost a year of my life on it having severe side effects; feeling like the worst flu everyday, my colitis came back full force which I was fine for yrs from it, severe! Weakness, pain I have that has become excerbated to the extreme and as fatigued as it made me I couldn't sleep at night even with an Ambien. I could go on and on all my other Drs PCP, nephrologist even a foot Dr I went to for a previous broken ankle all cringed when they found out I had started with HU a yr ago. They said it was a harsh drug and many people could not tolerate it. The cold hearted heartless Dr I was going to could care less about my symptoms and would try to make you think it was all in your head but insisted I would need this med for the rest of my life. I cry all the time from feeling so sick and feeling like has been passing me by. My sister and PCP kept saying to get a second opinion which I have an appt in 2 wks. It has already been 2 wks I went off the med completely and I still feel weak etc. I have CKD since I was a child and meds clear my system much slower than the average person and I found out HU goes through the kidneys for clearance . My dosages were 500mg five times a day then 3 times a week then two times a week until I got the jerk to go down to once a week. I didn't feel one but better. A pharmacist told me as long as your on the med no matter the dose you will always have side effects being the class of drug it is. My Dr went ballistic when I brought that up he will not tolerate any suggestions. I pray the new guy I go to is human with a heart. My PCP suggested this new Dr and told me he is a nice guy and a great listener. Good luck on your problem and think about a second opinion. Janet