Starting Hydroxyurea : I saw my Haematologist... - MPN Voice

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Starting Hydroxyurea

Dovme
Dovme

I saw my Haematologist today - platelets are over a 1000. So l am starting my HU tomorrow. I am almost 60 so a few months earlier then planned. He is seeing me weekly while l adjust and he gave me his mobile if l have problems. Good support l thought! Little nervous- but am encouraged by everyone here and how well most of you have done

Interestingly in the context of Covid he said that he also thought the HU would offer protection from clotting especially to those with high platelets

Any tips from you all much appreciated?

42 Replies
oldestnewest

Best wishes...

Fingers crossed and I hope it all goes well for you of course... 8-D

Steve

ox

Dovme
Dovme in reply to socrates_8

Thanks much appreciated

I only have positive things to say about hydroxy. I started at 59 , now 66 and have had no side effects at all. My dose varies according to what the platelets are doing. I feel more at ease knowing that I’m less likely to have a stroke, thrombotic event,

I hope it works as well for you.

Best wishes

Judy

Dovme
Dovme in reply to piggie50

I very encouraged hope my journey goes the same way as yours. Thank you

Windy51
Windy51 in reply to piggie50

Hope I do as well as you thank you

Glad to hear you are being closely followed as you start the HU. Standard protocol is labs every two weeks, so you will be exceeding that. Hopefully you will be one of those who can tolerate the HU and benefit from it. The good news is that there are other options if you have problems.

Here are a couple of the better information packets on HU

packageinserts.bms.com/pi/p...

rxlist.com/hydrea-drug.htm#...

You will find in some of the patient education sources a recommendation to be sure to protect others in your household from exposure to HU due to its toxicity (carcinogen/mutagen). It is simple as others not handling the capsules or touching the bottle without gloves and washing your own hands after taking it. Some also recommend the use of a condom for sexually active heterosexual couples as HU passes into semen and vaginal secretions (protection from exposure rather than birth control). These are all easy steps to take to properly manage the medication use.

All of the meds, even aspirin, we use for treating MPNs can have significant risks. Using no meds has risks. It is pretty daunting to review it all. It sounds like you have carefully reviewed all of your options and chosen HU over the other options. Wishing you great success in the next step in your MPN journey. Please do let us know how things go.

Dovme
Dovme in reply to hunter5582

Thank you so much thats very useful information. Much appreciated.

l discussed interferon with my haematologist but he advised that all his ET patients were doing well on HU. Listed pros and cons to me. But he is open to change if l was unhappy or it didn’t work out. Time will tell. At some stage l may book an appointment for a second opinion with the MPN leading specialist in Berlin who is based at the Charite hospital.

hunter5582
hunter5582 in reply to Dovme

That sounds like a good plan. I would consult with a MPN-expert regardless. I have a local hematologist (great doc) who handles my ongoing care and a MPN Specialist who I see periodically to consult and advise us on my PV treatment. This approach is working well for me.

Hello,

Who is this expert in Berlin? Thanks

This is the professor listed on MPN Germany site :Prof. Dr. med. Philipp le Coutre

Charité – Campus Virchow-Klinikum

Medizinische Klinik mit Schwerpunkt Hämatologie, Onkologie und Tumorimmunologie Augustenburger Platz

13353 Berlin

Very interesting to know. My hematologist is thinking in Hydroxiurea althought my platelets are 550 maximun 580, hematocritic 49, phlebotomies each month. No bad but he says the risk is my age, 62. I don't know anything about it. Looking for information. Thanks fir sharing.

My Integrative doctor don't think anything about this drug. It will be my only election.

Best regards

The greater risk of thrombosis in PV lies in erythrocytosis (or leukocytosis) than in thombocytosis (per some f the current research). Many docs now lean towards PEGylated Interferons or Ruxolitinib (based on symptom profile) over HU for a number of reasons.

There is a lot of info out there about the options. Here a a few.

onclive.com/view/added-cyto...

ncbi.nlm.nih.gov/pmc/articl...

mpnforum.com/spivak-how-i-t...

The latter link is to an interview with my former MPN Specialist consultant. If you are interested to see more of how Dr. Spivak approaches PV, you can message me and I can forward the article he published.

All the best you you on your next steps in your MPN journey,

Can you send me it, please? Everything us welcomed. I hace to learn a lo to discuss with my doctor. Thanks

It’s nervous at first starting but you’ll do fine. I’ve been on three pills a day for two years now and I just turned fifty . My platelets were 1.6 million now they stay in the 600’s. I actually feel better overall other than being fatigue. Good luck!!

Dovme
Dovme in reply to ggrana

Thanks- hoping it will be the same for me

Dovme
Dovme in reply to ggrana

Thank you

Hi Dovme.

It’s natural to be nervous. It gets a lot easier after taking that first tablet though.

I share Judy’s positive view. I’ve been on hydroxy for over four years, I don’t have any issues with it, my platelets remain stable (lower 300s) on a relatively low dose of 4x500mg. I also have peace of mind that my thrombotic risk has been substantially lowered.

With regards to side effects, I did have threatenings of the odd mouth ulcer in the early days of treatment. However, that soon settled as my body adjusted. I’ve always taken my dose with a large glass of water in the evening after dinner, my thoughts being if there were to be any side effects I would sleep through them.

I hope hydroxy suits you as well as the many members on this forum who tolerate it well. It sounds like you have superb care from what you’ve said. You are so very lucky in that respect.

Good luck

Mary

Dovme
Dovme in reply to mhos61

Thank you very much it’s giving me a very positive vibe. Fingers crossed

Good luck to you . I’m seeing my haematologist tomorrow and have a feeling my platelets have gone up . I’m sure the treatment will out way the disease .

Dovme
Dovme in reply to Kiki64

Thanks and wish you well with your appointment

Kiki64
Kiki64 in reply to Dovme

Thank you

Good luck! Anxious to hear how you do with it. My platelets Are 1 million 44 so I know it won’t be long for me either. I’m only 36 with no history of any issues so we have been holding off but I’m pretty sure once I get to 1.5 million I’ll have no choice...

Dovme
Dovme in reply to Mamab83

I keep you be posted and thanks

Time feels right for me to start

I have been taking hydroxy for 4 years and now big problems with it -it has been effective on my platelets. I do need to vary the dose from time to time. Do drink plenty of water -and protect against the sun. Good luck with it, it sounds as though you have excellent medical support.

Dovme
Dovme in reply to Bluetop

Thanks much appreciated

I have had a very good experience with hydroxycarbamide, been taking it for nearly 15 years and have had few side effects. I started taking them at age 50 as venesection didn’t work for me. My platelets are below 400 and the only time they have risen is when I had a bad chest infection 2 years ago ( resettled within 3 months without an increase in dosage). I had the most trouble with aspirin which really irritated my stomach, doctor prescribed clopidogrel and been fine in them. Good luck .

Dovme
Dovme in reply to Wesleygrange2a

I hope l do as well as you. Started today first pill lol

really hope this medication helps you. I am similar aged 62 years on Hydroxy daily for 2 years now. Platelets down very nicely and glad to encourage you and say , I ve had no sid effects.

Please feel welcome to ask me anything and I Il do my best to help you.

Hi Dovme,

I started taking hydroxy 4 months ago. Initially I had some nausea, and had z very 'airy' stomach, plenty of burping/belching. I lost my appetite too. That eased a bit, but to help I have been prescribed omeprazole to help my stomach. On advice I also started taking it at night rather than in the morning as I had been. That has really helped and I haven't felt the nausea since. I've had no noticeable side effects other than this. I had night sweats and fatigue before diagnosis, and still have both, but my bone pain has almost gone as my platelets have lowered.

I started on 500mg per day, now still take that but it was raised to 1000mg on 3 days of the week to help my platelets lower further, and noticed no difference when the dosage was raised.

As has been said before, drink plenty of water, and a good amount with the tablet.

Wish you well, take care

Dovme
Dovme in reply to Minu68

Thanks for the tips about taking at night

I will try that as well.

Sounds like you have a good haematologist. You'll be fine, all the best❤️

I started at 59. Some side effects. But no more severe that the PV issues. Watch sun exposure, drink lots of water, I also experienced sone tooth decay, I had never had problems before. I was also told to watch my tea consumption. My doctor had told me he usually saw my numbers in autopsy reports. The side effects are better than the alternative. I also joined a local study. That gave me insight into sone of the vague symptoms we all experience. Bone pain, fatigue, headache, inability to concentrate, night sweats, constipation. Good luck. I hope it helps you

Dovme
Dovme in reply to GarciaB

Thank you knowledge and experience is always helpful

Tea in the morning? Thanks

Most recent period on Hydroxy was pre heart op last year. I was 76 then. Always more nervous than I needed to be when starting. Keep an eye on this site and you will get good advice and encouragement. Good luck.

Dovme
Dovme in reply to Eadaoin

Thanks will do for sure

I started at 55 my platelets were a million. I was symptomatic, dizzy, brain fog......had double vision while driving two times........so hydrea has platelets just over 400. beats a stroke, heart attack, or fatal blood clot. I take 1 a day.

Dovme
Dovme in reply to MPN123

Yes totally agree - thank you

What are the blood count to take Hydroxyurea?

Thanks

My blood count is 1070 but l am almost 60 years.

Greetings from Fleetwood England.

You are not alone on this journey.

I found that I take my bullets after lunch.

At first I would sleep for one hour.

Drink water each hour and keep well hydrated.

Gentle exercises is a help.

Don't Google your condition.

Write down your your issues and concerns.

We are all different.

Take care. XX

Update: Saw my Haematologist this morning my platelets have started to fall now 760. At last!! Some way to go yet but still positive so far. Thanks everyone for the encouragement. I also had the flu jab - which is much earlier this year due to covid! And he is conducting a Vit D analysis to determine if or what l need to take

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