Hi. I am 35 year old male diagnosed with ET in 2018. Its been 1.5 years I’m on Hydroxyurea. Does anybody has any idea on planning a baby while having this medicine. Some articles say 3-6 months or upto 1 year break from medicine is important for males on Hydroxyurea. I tried to take a break and in 3 weeks it reached 600k again so m back on Hydroxyurea again :)...
I guess I have to give up on becoming a father....Please share if anyone has gone through this.
I guess the obvious solution would be to see if there is an alternative drug.
What could be the alternative drug ? Anagrilade has same issues. Hepc medicines?
You are so young.
Is your haematologist aware of the issues you’re facing ie, starting a family? It would be advisable to consider Pegasys as a treatment option.
My doctor has also suggested Pegasus but due to longer duration on this medicine (min 6 months period) we are not comfortable. I also feel that my doctor is not very keen on putting me on Pegasus since Hydroxyurea is doing well on my treatment.
Is there anybody in this group (male) who can share their experience with this similar situation.
Have you suffered a previous thrombotic event or do you have other risk factors? I’m Just wondering why you’re on hydroxycarbamide at all at the age of 35.
It would be ideal if you could see an MPN Specialist. I hope one of our male members can give you some advise.
Ok. I live in Pakistan and would really appreciate if you can share contact details of MPN Specialist to take an appointment. I can travel to UK. I have no previous thrombotic events. Found out ET on regular company check up.
Hi, I am also from Pakistan and diagnosed with ET a few months ago. If you are looking for a specialist then go to Dr. Bushra Ahsan, she’s a consultant in Shaukat Khanum. You can take an appointment. Everything will be alright.
Below is a list of highly rated worldwide haematologists. Not all are MPN Specialists though.
MPN Specialists are few and far between. In the UK there is Professor Claire Harrison at Guys and St Thomas, London and Professor Tim Somerville at The Christie, Manchester. There maybe more, I’m unsure on that.
I imagine you would have to contact the hospitals in question to see if they see private patients as you live outside the UK.
Hello. Don’t give up! I believe Professor Harrison runs a Clinic for pregnant women with MPNs. Therefore the knowledge of how to manage fertility, MPNs and drug intervention is out there. There are a number of other drug options which do not compromise conception. However, as others have pointed out, there is a question to be asked about why you are on Hydroxy given your age and what you have told us about your health. You could always email Prof Harrison and ask for advice / the name of name MPN specialist nearer to you. All the best.
Hi. We contacted Guys and St Thomas London but unfortunately doctor Harrison does not see private patient. Any other options ? Please advise.
No Prof Harrison doesn’t have a private clinic. I thought you might be able to get a recommendation about who to see in Pakistan. I note that someone has made a suggestion above.
The key question that is bothering me - which others have alluded to - is why, at 35, and with no previous thrombotic events, you are on HU? You say that your platelets reached 600 without HU. The figure for intervention - or at least a conversation about intervention - in otherwise healthy young patients (under 60 years) is 1500. Therefore I am wondering why you have been prescribed any drugs at all other than aspirin and regular monitoring. Some younger people commence drug treatment even though their platelets are below the threshold because they feel their symptom burden is too great - fatigue, itching etc. I resisted drug treatment until my platelets hit 1700 and by then I’d been rediagnosed with PV. If you haven’t already done so, it is definitely worth a conversation with your haematologist about your current treatment plan. And I know you are reluctant to take interferon but perhaps, if you must take drugs, that is the compromise, so you can try to become a dad. Let us know how you get on.
My platelets were at 1 million (jak 2 negative) without any symptoms when I was first diagnosed during company annual medical check up. There is no research in Pakistan on ET and I feel doctors are just following protocols. Last 2 months my dose has gone up... from 2 (1000 grm)tabs for 5 days a week to 7 days a week and I have a feeling it might increase to 3 tabs (1500 grm) in near future. I need to have 2nd opinion, preferably outside Pakistan before its too late. I am also considering moving to interferon but need to see specialist to build confidence. My current platelets are in 700 to 800k.
Seeking a second opinion seems wise. I note you have a suggestion. I’d also suggest you post on this Forum asking for the names of MPN specialists who consult privately in the U.K. Certainly a number of U.K. posters have mentioned seeing clinicians privately (although MPN specialists are few and far between but some haematologists are more clued up than others. And if they don’t know the answers you want someone who recognises the limits of their knowledge and is willing to seek answers from an expert colleague.)
By way of dosage comparison when my platelets were at 1700 I was put on 500mg - one capsule of HU - per day. When they tumbled but Plateaued I was put on an extra 500mg once a week. They then plateaued again around 600 so I now take an extra capsule twice a week (ie 9 x 500mg across the week). The dosage you’re on does sound excessive. (I’m under Prof Harrison’s team at Guy’s which I think is pretty much gold standard protocols.)
If you want to have a family, then you will need to d/c the HU for 1 year before having a child. HU is teratogenic - causes birth defects. In men - it can cause hypogonadism - significantly lower sperm counts as well. There is some newer research that indicates it can lower testosterone as well (but this is not completely verified or in common practice). HU also passes into semen, so while on it sexually active men are advised to use condoms to protect their partner. HU is also a mutagen and a carcinogen so protecting the one you love is something we would all want to do. In fact, women of child-bearing years not on HU are advised to wear gloves if they even handle the bottle. There are alternative drugs to consider. In fact, many docs do not use HU as a first choice for someone your age. Pegasys and Anegralide would be possible choices if your platelet counts really are way too high or you are symptomatic. If you are JAK2+ ET, perhaps Jakafi would be a consideration, but that would be off-label use as it is only approved for Polycythemia myelofibrosis. Something to know is that many docs treat ET with platelet counts at the level you cite with aspirin only. I had ET for over 30 years with platelets cycling between low 500s and mid 600s and treated with aspirin only - and never had any problems. I would suggest consulting with an MPN-specialized hematologist. Many docs (even hematologists) know very little about MPNs and rely on old training and outdated treatment protocols. I found a great MPN-expert on this list of patient recommended docs mpnforum.com/list-hem/ . All the best to you. Being a father is a wonderful experience - it will be the hardest job you ever do but it is totally worth it. Being Grandfather is great too!
Thank you guys. Really appreciate all your responses. Will be visiting UK soon!
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