Hi, I was diagnosed with PV in February this year. Started venesections and aspirin straight away.
I have just started on HU and wondered if anyone can share their experiences of what to expect. I had bloods checked this week after being on HU for just over 3 weeks. My HCT is now 42, Hb 12.8 and platelets 290, WBC in normal range (don’t have figure)
My haematologist was happy with numbers and kept me on same dose 1 x 500 tablet a day Mon-Fri none Sat or Sun.
As this is very early days what I wondered was should I expect the numbers to fluctuate and rise again ? My platelets since diagnosis have only been over the 450 threshold once and the 290 was quite a surprise to me.
Any insight as to what to expect would be appreciated. I take the HU just before bedtime and have not experienced any adverse effects yet. Could this too change ?
Thanks
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Hocus58
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It sounds like you are responding well to HU so far. You are on a fairly low dose. It sounds like you are tolerating HU so far. Note that we all respond differently to the meds used to treat MPNs. While it is helpful to know how others respond, you cannot apply others experiences to yourself.
I have been on HU on three different 1-2 year stints, the first about 30 years ago. The first two times I tolerated HU OK, but more recently (2018-2019) I am now HU-intolerant and it was not effective for me. I have done much better ont he interferons (Pegasys/Besremi) to treat the PV. I also did not tolerate the venesections in the long-run. the venesection-induced iron deficiency symptoms were worse than the PV symptoms for me.
to answer your question, you should expect your numbers to fluctuate. There are a number of factors that can affect erythrocytosis and thrombocytosis. It is the trend over time that matter, not any single lab read.
Since you are new to hydroxyurea use, there is information that is good to have. Here are a few links that may be helpful.
Thank you Hunter for the reply and information much appreciated. Understood everyone will have a different response but just wondered if fluctuating numbers were common. As you say it is not one single lab result but trend that matters. Will just need to wait and see what happens over time. Thanks again
I thought it might be helpful to add [just in case] that you [every one] should probably pick one health system that has clinical labs and always go to of the affiliated lab draw facilities, otherwise the results can also vary widely, despite so-called standardization of them.
I was on HU for just over a year. It worked well but took longer than 3 weeks. My PLT was over 1000, and went to 300's after several months. But my HCT started going down before I started HU which is confusing.
What was your HCT before starting HU? As Hunter says, you have a low dose, three weeks is fast and suggests you will do well on it.
You may have seen here that some Drs are ok with PLT up to 600. It depends on details of your condition and whether changes are sudden or gradual.
Hi thank you for the response much appreciated. When I was first diagnosed my HCT was 0.601. With 5 venesections in 2 weeks this reduced. Had last venesection on 7th October and when I started HU my HCT was already under 45 at 44, platelets 377. As Hunter says one lab result is probably not best to base anything on but looking at trends is what matters. Will just need to wait and see what next results show in December. Thanks again
Understand, your HCT has been largely controlled by venesection, 5 in two weeks is aggressive but your Dr wanted fast reductions. Your Dr will be watching whether the HU alone can hold the HCT down. This might take longer to see the benefit.
Hi I have had 8 venesections in total the 5 were in Feb/March this year and got the HCT right down, 2 in July and 1 on October 7 was last one. I suppose time will tell.
Thanks for response. My diagnosis came from bloods being checked due to having helicobacter which took 2 lots of triple therapy to eradicate so right at start I have been iron deficient 😬 8 VS won’t have helped the situation. My bloods being now in range but still experiencing some fatigue, headaches sometimes and just achy. Discussed with Haem think due to iron deficiency and low serum ferritin but won’t give iron supplement says with bloods in range will slowly build up naturally, hopefully 🤞
I was diagnosed with PV in early 2020 and have been on hydroxy since around June 2020 after having what were described as a series of "aggressive" venesections (2 per week for 2 weeks at one stage). I find that the blood counts can move around for no particular apparent reason in spite of my efforts to find reasons. Being well hydrated, especially when the bloods are done, is beneficial and may help the HCT number. The challenge can be that although as Hunter rightly says the trend is more important than one set of data, certainly in the UK (I'm in the UK) the medics follow guidance that says the HCT must be < 0.45 (or < 45% depending on how they present the data). As soon as I hit that number I have to have a venesection yet on the day the blood that is taken, when analysed can show my HCT below 0.45 which I find annoying. I don't know if a different target applies for males and females, I've not heard of one. One specialist admitted that analysing the bloods is a bit variable and they could take 2 samples 5 minutes apart, analyse it on the same equipment and get different results. So they're comparing a bit of an imprecise movable feast with a single absolute target. Based on my experience I would say don't be surprised if the data moves around a bit but certainly at the moment your data looks good. There also seems to be general recommendations on eating a low inflammatory/mediterranean diet to potentially help keep the numbers down. My only challenge so far has been that the treatment results in anaemia as Hunter has described so I have less energy in addition to any side-effects of the PV itself. I'm banned from taking any iron supplements!
You might find it helpful to consider joining the UK MPN Voice buddy scheme if you've not already done so. You'd be put in touch with someone diagnosed with PV for longer and you get their advice. You can find details here:
MPN Voice (and their equivalent in the USA such as MPN Advocacy) run regular events and webinars that are free to attend so keep an eye out for those as lots of useful information is given from world renowned specialists. It's a good idea to track your blood data and keep a record of the results so you can monitor things and be the well-informed patient. There are tools available to help such as PV tracker, details here:
Everyone seems to react differently to the hydroxy. I take mine in the morning and initially had a bit of nausea for an hour but that went away and have had no problems since. Things can change with MPNs and your dosage may have to be adjusted till the medics find the right balance between medication and venesections, if necessary. Currently I seem to have around 2 or 3 venesections a year (1 booked for 2 week's time because my HCT recently was exactly 0.45, drat) in addition to the hydroxy which is 1gm/day for 5 days and 500mg for 2 days.
Hi Paul, thank you for response and info much appreciated. Early days for me…..just need to look for trend in numbers as Hunter says and not one off results. Like you I had 5 venesections in 2 weeks at diagnosis. My diagnosis came from bloods being checked due to having helicobacter which took 2 lots of triple therapy to eradicate so right at start I have been iron deficient 😬 As you know venesections, of which I have now had 8 won’t have helped the situation. My bloods being now in range but still experiencing some fatigue, headaches sometimes and just achy. Discussed with Haem think due to iron deficiency and low serum ferritin but won’t give iron supplement says with bloods in range will slowly build up naturally. We shall see. Thank you again for reply and although everyone’s experience is different it’s good to get a feel for what others have experienced, stay well.
Well good morning! It’s such a muddling time isn’t it? A bit frightening as well.
The three replies below are a little on the negative and possibly concerning side - we re all different as Hunter says, but there are thousands of people all over the world who take HU successfully with no probs so please please don’t let anything slightly Neg concern you.
I m here to spread a bit of sunshine !!😊
Don t worry - we ve all been there and all will be well.
(Your initial diagnosis and blood counts sound a bit like mine. I m now 68 and was diagnosed 15 years ago with PV. I’m totally fine)
Your counts are spot on. ( I started on 500mg daily for 5 days, after 6 years that crept up to 2 x500mg daily and I ve been on the same dose for 9 years with a venesection 3/4 times a year)
What to expect. Well your haematocrit will almost certainly vary every 6-8 weeks but it’s absolutely nothing to worry about - always ask for a venesection rather than an increase in meds. You need to establish a good rapport with your haematologist. Let him know that you know EXACTLY what’s going on. It’s your body.
Don’t let anything you read about HU frighten you. I m not being gung ho here, but the drug companies have to cover every eventuality. It’s a very mild chemo drug after all. Mild is the operative word.
I usually take my 2 HU mid morning but I sometimes forget and take it later ( have been known to leap out of bed at midnight to take it) I occasionally have gone loopy and taken a double dose, or forgotten altogether. Don’t recommend either but I was, again, fine. My message is, don’t stress over it. I don’t wear gloves to handle it either. Have been known to keep them in my bra if I m going out. No glowing boobs yet! ( I do hope you re a lady and not a chap )
Your platelets may of course rise if you get an infection. They ll go down again.
If you re like me and thousands of others you ll rumble on for years and most of the time forget you have PV.
Look after yourself. I don’t drink alcohol or smoke, but that’s up to you. I walk for an hour briskly every day and drink at least 2 litres water every 24 hours.
Thank you for your response which most certainly has spread a bit of sunshine ☀️ my way, in an otherwise dreary dull day here in Bonnie Scotland. Should really be used to Scottish weather by now 😉
It is good to hear someone point out that there must be thousands of people in the world with PV and taking this drug and getting on with it, the silent majority so to speak.
I am indeed a lady and you made me smile this morning. Thank you for the info and spreading your special cheer.
Sounds like you’re doing well! I did well with HU for about 15 months then the muscle loss and shortness of breath caught up to me. It was frustrating to be exercising daily and weight training 2x/wk and still losing muscle. Off HU last mid-May (immediately started feeling better) and started Besremi in July.
Your platelet levels look good and your hemo is happy. Your Hydroxy meds are quite low so everything looks good and if you are feeling ok don't worry. Hydroxy has some side effects. tiredness and some hair loss - not that much. Hope everything goes well for you
I do not intend to be a "Debbie Downer", in any sense, but I want to provide factual data, as opposed to anecdotes and in contrast to the sunshiny remarks about HU's potential for negative side-effects, which were made above- as fatigue and hair loss are neither the most frequent, nor the most serious side-effects of HU.
Witness: "Hydroxyurea—The Good, the Bad and the Ugly"
in which it is stated: "On the dark side of the matter, recent studies show new evidence of a possible contribution of HU to skin cancer progression**, and the already common HU cancer treatments are still far from perfect. HU cell-killing mechanisms appear to be more general than previously thought..."
**referring to this:
"Non-melanoma skin cancer associated with Hydroxyurea treatment: Overview of the literature and our own experience"
Abstract
Nonmelanoma skin cancer is the most common malignant tumor in the fair skin population, with each year several millions of diagnosed cases. Their most common risk factors are fair skin, a history of excessive ultraviolet light exposure, chronic inflammatory skin conditions, exposure to radiation, and contact with arsenic. Certain drugs can also be associated with a higher risk of nonmelanoma skin cancer. These include hydroxyurea, which acts as a metabolic inhibitor of ribonucleotide reductase and a potent nonalkylating myelosuppressive agent. It is used for the treatment of various myeloproliferative disorders, including chronic myeloid leukemia, polycythemia vera, and essential thrombocytopenia. Several publications describe an increased occurrence of skin manifestations following hydroxyurea treatment. A growing body of evidence indicates a possible role of hydroxyurea in skin cancer progression. In this review article, we summarize some relevant observations about the association of hydroxyurea and skin cancer, and we describe our own clinical experiences to provide up to date recommendations about the care of patients on hydroxyurea therapy.
Read down the page for numerous articles documenting multiple types of [aggressive] skin cancers developing from HU use.
...and finally, this:
"Second Malignancies in Philadelphia-negative Myeloproliferative Neoplasms–Single-center Experience"
Wherein they state:
"Results: A higher occurrence of second malignancies was found in the group treated with hydroxyurea (7.6%; other cytoreduction: 1.2%; without therapy: 0).
I'm sorry if this seems to be depressing, but it, along with my personal experiences of increased oral mucus membrane sensitivity, increased acid reflux [despite previous control by taking Prilosec], increased susceptibility to fungal infection, daily headaches, and difficulty in maintaining balance [promoting falls], is what made me become adamant to get off of HU.
As I was re-reading the posts here, it occurred to me that your MD might not have thought to check your folate and vitamin B12 levels, both of which can become depleted from blood loss, and both of which deficiency of can very often contribute to fatigue and even nerve symptoms like numbness, paresthesias [like pins-n-needles sensations], and apparent muscle weakness [which can actually be caused by nerve impairment at the neuromuscular connections [junctions]- so it may be helpful to ask about getting those checked.
Also, although I also have treatment-related iron deficiency, and have been told not to take iron supplements to treat the symptoms it causes, the MD's have never had a problem with me continuing to take the vitamin B12 supplements [which I've been on since I nearly-completely stopped eating red meat for health reasons].
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Due to start interferon
feeling quite fed up, is it possible that interferon doesn’t work for me? 
How soon should HU for ET work?
Just diagnosed with ET calr positive 39 yr old male
Updated Numbers Based on Recent Appointment
