Hi everyone! This is my first post. I have been diagnosed with PV JAK2 positive for 3.5 years and have been on this forum reading and sometimes responding. I am 55 year old female from Canada.
After just a few venesections I settled down into platelets gradually rising. When they hit 1800 I conceded to a trial of HU.
Took my first dose yesterday with an antinauseant and after that wore off I felt mostly fine.
My question is do side affects happen right away or develop over time? I would be grateful for any and all experiences from you guys.
Thanks so much,
digijools
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digijools
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Welcome. I’m a 63 year old female in Canada with ET. I’ve been taking HU for a year with no side effects other than platelets have come into normal range - and other blood counts are also suppressed (which is what HU does along with suppressing platelets). There are lots of people on this forum who’ve been taking ET for decades with no side effects of any significance. Let’s hope you and I are two more! I also take clopidogrel (anti-clotting med) and I bruise super easily as a result - but other than sometimes looking like a punching bag, that’s it!
You will likely get a range of answers to this question as our response to HU varies so widely. Some people tolerate it well for years with few adverse effects. Others, myself included, are HU-intolerant and get toxic effects even at low doses.
It is important to understand how HU works and what it is intended to do. HU is a cytostatic medication that interferes with DNA activity throughout your body. This is why it decreases hematopoiesis and helps lower your blood cell counts. However - it is altering DNA activity in other ways too. HU slows down all DNA activity, including in your intestinal endothelium. This is why some people get GI issues like constipation. It can also compromise vascular endothelium (much more serious) causing vascular ulcerations - leg ulcers - possibly gangrene. HU alters your immune system, which can cause mouth ulcers, thrush, etc. That is why you have to avoid taking live vaccines while on HU. On warning that many people do not get is that HU can pass into semen and vaginal secretions. Sexually active couples are advised to use condoms to protect the partner of someone on HU from exposure.
OK - so that all sounds pretty daunting; however, all chemotherapies come with risks and benefits. You will not know whether this is the right choice for you until you try the HU and adjust dosage as needed. While some side effects may occur right away, most take some time to develop. Likewise, most side effects will usually go away when you change dose or discontinue the HU. There are other options for you if HU is not the right choice. Jakafi and peg-interferon are two other options. Each come with their own risks and benefits. Short of having an unusual extreme remediate exaction, you will likely have time to sort this out and see if HU is the right choice for you. Keep track of how your body reacts and stay in close touch with your doc. You should be doing labs about every two weeks as you have initiated HU, so you will have the chance to mentor and communicate about how you are doing. All the best.
I have been I=on HU three times over the course of 30+ years. When initially diagnosed with ET, I was on HU 500mg/day for about a year. The doc discontinued and went with aspirin only when the protocol changed. I was on aspirin only with platelet levels cycling between the low 500s to mid 600s until about 6 years ago. Due to a gastrointestinal issue, I experienced a reactive thrombocytosis that put my platelets up near 1 million. Back on HU 500mg/day for a year until I stabilized and went back to aspirin only. On both of these cycles, I had no noticeable side effects. Back in April of 2018, I had another bout with reactive thrombocytosis due to a surgery. It was also determined at this point that my ET had progressed to Polycythemia 6 years ago and it had been missed by the hematologist. I started back on the HU, ultimately went up to 1000/mg even days - 500mg/off days. This is when I started seeing signs of toxicity. It started with mouth ulcers. I also experienced significant constipation (which is very unusual for me) and flatulence. Could not understand why the HU would do that until I understood the part about the compromised intestinal endothelium. It was complicated by other meds that also worsened the constipation, but the longer I stayed on HU, the worse it got. The mouth ulcers continued to be an issue, and I developed thrush. Once the thrush cleared up it turns out I had also developed leukoplakia (damage to the lining of the tongue). All of the adverse effects continued despite steadily reducing the dose. Most of the side effects subsided when I discontinued the HU. The constipation mostly went away after about 2 months, though I seem more sensitive now than before. The leukoplakia is still present. Perhaps it will heal in time.
Ultimately I consulted with an MPN specialist who looked at my profile and told me I should not be taking HU. The risks for me - with my individual profile - were far greater than any potential benefit. This specialist does not favor some abstract numerical blood cell target in determining the use of chemotherapy. He looks at the patient symptom profile, their genetic workup and determines a course of treatment based on each patient's unique profile. HU is clearly the wrong choice for me. It may however, be the right choice for you with your unique profile. Please be sure to find a specialist who really does understand the treatment of MPNs and is not just blindly following a standard protocol. I found the MPN-expert on this list of patient recommended docs mpnforum.com/list-hem./ .
Something to be aware of is that thrombocytosis can actually trigger increased risk of hemorrhage as well as risk of thrombosis. We all react differently to our MPNs. If you have not already been assessed for Acquired von Willebrand Disease, you should be. I am one of those who experiences alteration in von Willebrand factors even at platelet levels in the 800Ks. While I do not appear to have Acq-vWBD, the way the coagulation cascade works is perhaps more of a continuum where you can be at increased for a bleed even if you do not meet disease criteria. That describes my situation - which is why I no longer take aspirin as part of my treatment for PV. My treatment regimen is phlebotomy-only. This appears to be the right answer for me based on my unique profile. Your MPN profile is different, therefore your treatment regimen likely should be different than mine. I hope you find the right answer for you as soon as possible. Of course, the answer may change over time as the MON evolves, but that is the nature of our MPNs.
I hope this helps. This forum is really great for getting information and support. I have learned a lot here and continue to get great support from other MPNers. All the best to you.
I've been casually perusing posts on here for a few years but never posted anything up to now. I was diagnosed with PV just over 5 years ago, aged 52 - I had many venesections during the first 6 months or so, which lowered my red blood cell count but caused my platelets to rise. Also made me very tired! So I started on Hydroxycarbamide, experimented with the dose for a couple of years (in consultation with professionals of course!) and have now been on 1000mg daily for about 2 years. I have a blood test every 4 months and life's great! No side effects as far as I can tell. I try to keep fit and eat and drink sensibly. I know we're all different so I'm not speaking for everyone, but I try not to let the whole thing interfere with my life - and it doesn't! Good luck to you and everyone else who might be reading this.
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