I need advice about taking Hydroxycarbamide

[Zoebowie]

I’m 70 years old and just been diagnosed with ET Jak2. I’ve been put on 500 mg of Hydroxycarbamide but I’ve just received my script and read the leaflet and side effects and I’m afraid to start them. I had a knee replacement 5 months ago and took a blood clot followed by night sweats and a viral infection which cleared up after 2 weeks. had been perfectly fine before this apart from arthritis. I don’t really know what’s hit me and I feel totally lost. I still have pain where the clot was and don’t know if I still have a clot despite being on blood thinning tablets for 5 months. I’m worried about starting my new meds and wondered how anyone taking Hydroxycarbamide has managed with side effects.

[Mostew]

Welcolme . This forum is a great source of advice and info .It is scary taking hydroxicarbamide . But you will get used to it , hopefully . It's better to take it and try and avoid potential heart atacks/ stroke s

I'm taking 500 mg every other day , ( I'm not big)

I do take several natural remedies

)

Not directly got side effects from meds.

Drink plenty of water. Maybe take in evening to sleep off possible negative effects .

If you do find it's not suiting you , get in touch with hospital to discuss alternatives

I've found the heamatology nurses are good. Always available on phone. No appointment needed. . I'm in UK

[Zoebowie in reply to Mostew]

Thank you for your advice. I’ve been reading up on Hydroxycarbamide and it’s scary. Just afraid to take the plunge and start it as the diagnosis was a bit of a shock initially as I didn’t fully understand the information the consultant was giving me at the time and didn’t realise the full extent of the condition. I’ve always been pretty healthy and didn’t expect this. I know I’ll have to try it and see how it goes and hope for the best and thanks for suggesting I take it at night.

[Mostew in reply to Zoebowie]

So odd being in a cancer clinic. And to accept beong on medication . BUT i havnt had clot or anything .

Tried lots of natural appproaches .

Now compramise and use both .

It took me two years to start , but i

Its said if we have to have a cancer , blood one is best .

[Bariton in reply to Zoebowie]

The diagnose can be a shock, and it can take time to accept it and learn to live with this disease. There are big difference in quality of life but many patients with an MPN can function normally for a long time. Hydrea may scare you but in most cases it does what it has to do (keep your platelets within limits). I see a dermatologist twice a year.

[saltmarsh]

I'm 76 and have been on HU for over 2 years. Had knee replacement surgery 2 years ago with no issues. I take 1000mg 3 days/week and 500 the other 4. Also take a daily aspirin - 81mg - and vitamins. I can understand your concerns. My first HU prescription took a few days for me to wrap my head around. I take mine at lunch and dinner with lots of water and have not had an issue although sun exposure can be a problem which is easily addressed. I also limit my alcohol. The medication has worked perfectly for me - my original prescription was reduced after a year and the blood numbers are all in an acceptable range. I did have a problem with anemia and iron deficiency but that was likely caused by too many phlebotomies. I switched doctors and he eliminated them with great results. Many members on this forum have had good results but some have not so you'll just have to try it and see how your body adjusts. I wish you the very best on this new chapter of life.

[Zoebowie in reply to saltmarsh]

Thank you for your help. I appreciate your reply and wish you good health.

[Bariton in reply to saltmarsh]

And if, after many years you do not support Hydrea any more, there are other treatments available. Most patients are started on Hydrea, but if there are too many side effects, or when it is not tolerated any more, you can switch to other treatments.

[hunter5582]

Hello and welcome. Glad you found your way here.

Given that you have a history of thrombosis, are age 70, and have ET, you would be classified as high risk and cytoreduction is indicated along with either antiplatelet or anticoagulant regimen. It would be best to consult with a MPN Specialist about your treatment options for cytoreduction as well as which medication is best for blood thinning.

There are several choices for treating ET. Hydroxycarbamide and Pegasys are both considered first-line treatment options. Choosing between the options available requires a case-specific review and consideration of the cautions/contraindications for each choice. Your risk tolerance and treatment preferences are also part of the decision making process. Dr. Harrison, a leading expert, does a great job summarizing this choice. mpnjournal.org/how-i-treat-... It is important to note that all of our treatment options come with inherent risks. We have to make our decisions on objective evaluation of risks/benefits, not based on fear.

Others have done a good job summarizing elements of how to manage hydroxycarbamide (AKA hydroxyurea - HU). If you decide to move forward with this option, there is some additional information worth knowing.

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

We are all different in how we respond to the treatment options for MPNs. Some tolerate hydroxycarbamide and benefit. Others do not. I am one of the latter. I experienced toxicity even at very low doses of HU. I found the interferons (Pegasys/Besremi) to be more effective and easier to tolerate. My response does not predict yours. Just know that that there is more than one option to treat ET.

I do not believe that it would be considered normal to be experiencing continued pain five months after the incident of thrombosis despite treatment. Perhaps this is more related to the knee replacement, which can be a very challenging recovery. This is something that needs a proper assessment to determine what is going on.

Wishing you all the best.

[Zoebowie in reply to hunter5582]

Thank you for your reply and I appreciate the links you’ve sent. I’ll be looking at those and researching as much as I can.

[Scottishterrier]

Please don't be afraid to take them I was put on them many years ago for a hepatic infarction the only side effects I have had was nausea but was put on a drug called domperidone three times a day which worked a treat and also the fatigue but my consultant says if you can have a couple of hours sleep during the summer if we get a hot summer always wear factor 50 t shirt and a sunhat or a light weight loose fitting topStay safe

Scottish terrier

[Zoebowie in reply to Scottishterrier]

That’s very encouraging. Thanks for the practical advice

[Ebot]

Hi there. Do NOT dwell on those information leaflets with the list of side effects! They can do your head in!!

The reality is that the overwhelming majority of patients tolerate Hydroxy really well and experience no, or fleeting side effects.

I spent months agonising about whether to start drug treatment. What a waste of energy! I held off as long as I could until my numbers were so high it was a no brainer. My numbers tumbled and I felt so much better. A new lease of life!

Very quickly, popping a Hydroxy becomes no more traumatic than popping a paracetamol! And the effects can be remarkable.

The one bit of advice to heed, is to watch out for the sun. Keep covered up, slap on the sunscreen and stay hydrated.

Wishing you all the best.

[katiewalsh]

Hi. I think everyone was afraid at first to take hydroxyurea. I think I waited a few months. But that was 10 years ago & I’m now 72 & haven’t had any problems. I actually feel very fortunate that it still works for me. Take care. Katie

[gardner99]

Hi Zoe. I'm a 66yr old male, diagnosed with ET Jak2 following BMB test results last September. I was immediately advised to start HU, but like you was very reluctant mainly due to the side effects. However, I've now finally relented and will start my first dose tomorrow x 500mg 4 days a week. I'll have bloods done after 2 weekly intervals, then review after 4 weeks. I'm still dreading what may happen but if you don't try you'll never know. Plan B would normally be to try an alternative drug which I might do if HU doesn't suit. The possible side effects are a real hurdle for me and many people in our situation I think, but you just have to work it out in your own head and decide when's the the time to try. My time is now, so I'll see what happens as much out of curiosity as anything. I'll let you know how it goes. Best of luck.

[Zoebowie in reply to gardner99]

Thanks. I’ve decided to start mine tonight so the best of luck to both of us.

[Oscarsboy]

Hi. I'm 75 ET JAK 2 and have been on hydroxy two and a half years. I have 500mg a day and 2 tablets Friday Saturday and Sunday. The side effects can look very scary when you read them. Thankfully I've not had too many issues with it. Also have arthritis and sometimes bone and muscle pain. However it's not constant. I also have one aspirin a day. Try not to overthink it before you start and see how you get on. Best wishes to you.

[quanglewangle]

Please remember - every treatment has side effects and Patient Information leaflets list everything that could happen - but usually does not!!

As you will hear from Hydroxycarbamide users and your research, many 'side effects/symptoms' come from Et itself - but whatever the mechanism is involved, most effects (if you get any)are minor. If not - there are alternative treatment regimes that may suit.

Note too that HU will alter your FBC results so many levels may be outwith 'normal' levels - but your medics will keep an eye on that and adjust if required.

A brief synopsis - I was diagnosed in 2010 and have been on Hydroxycarbamide ever since (currently) 500/1000mg alternately). Minor skin damage (yes keep out of the sun) sorted with Efudix, itching here and there at times kept under control with Fexofenadine, slight numbness in extremities (but all still working) etc.

Took Aspirin prior to a little TIA in 2019 and Edoxaban blood thinners since.

Result - a wealth of tablets/capsules every day (7 day organisers very helpful) as I also supplement a lot (and have a few co-morbidities)

And life goes on - now 80, so now the shops seem a bit further away and the slope of our road is getting a bit steeper - and after 65 years of work it is hard not to feel irrelevant sometimes but Hey! I woke up yet again this morning and had the first dog-walk of the day in the sunshine, and now its time to get out and tidy the garden ready for Spring and the allotment....

Count your blessings

[Exeter21]

ask to go on Peg Interferon injections & speak to an MPN for advice . 👌

[leopoldcat]

I’m 76, male, with ET, having been diagnosed with it after a particularly painful blood clot. I weigh 66kg, and have been on Hydroxycarbamide for 12 years. I’m currently on 23x500mg mg per week. I’ve never had any discernible side effects (so far!).

[Loubprv Volunteer]

Hello!

Gosh it IS jolly scary isn’t it? I remember so well 15 years ago when I came home with hydroxicarbamide. I took one out of the packet, and it sat in the table for 15 minutes while I had a cup of tea and a chocolate biscuit ( or 4). I even put a bowl on the table in case the dratted thing made me sick!

Do you know what? Nothing. Not one side effect. I’ve been taking 2x500mg daily for 14 years. I still have all my hair, all my teeth, feel absolutely fine, sleep reasonably well and have lots of energy - most of the time.

I’m 70 too.

Please don’t be afraid of this drug, thousands of people all over the world take it and it works really really well.

If you need an MPN buddy, please do contact Maz at Mpn voice.org.uk and she will put you in touch with someone who you can talk to.

We’re a friendly bunch out here, living our lives well. No need to be frightened. You’ll be fine. Drink LOADS of water ( 2 litres every 24 hours) get plenty of good exercise, eat lots of fruit veg fish etc and your body will soon adjust to its new life.

Sending you very best wishes

Louise Cumbria x

[Zoebowie in reply to Loubprv]

Thank you very much for your encouragement Louise. I’m starting with the meds tonight and I’ll hope for the best. Mind you drinking lots of water will be hard for me but I know that I must. Thanks again. Take care.

[Spanelmad in reply to Zoebowie]

With drinking water thing ,get a large measuring jug (mines 2litres)and every time I have a glass of water ,I fill the jug by the same amount.The visual thing helps with the volume.Hope it's going well now your a couple of days in!

[Meatloaf9]

Hi, I also hesitated as long as I could before starting HU. I started at age 71 and I am now 74. I have had no side effects or adverse reactions as far as I know. I have PV and take a total of 10 500mg caps per week. My blood counts have been perfect (my mpn specialists words) for the last 2.5 years, been on HU for 31 months now. My mpn specialist told me he gets about 130 new mpn patients per year for the last 11 years, out of all of those he only has about 12-15 on interferon. I would guess that HU is far and away the most common drug prescribed for PV and ET in the world. Probably one reason is its affordability and availability and the fact that it has been used for 40-50 years so safety has a long track record.

Good luck in making your decision and best to you always.

[Suenami]

Glad to see you’ve joined us. This forum has been an enormous help to me. I am 77 years of age and like you I was in shock when I looked at my prescription and saw I had to pick it up at the cancer clinic. Talking to my hematologist he was emphasizing the possible threat of a blood clot. I’m on warfarin because of a mechanical aortic valve replacement and I was diagnosed with RA four years ago. It was my rheumatologist who referred me to a hematologist because my playlets had been higher than normal for a couple of years. So as you can see a lot on my plate and now this! I appreciate your feeling of being lost or overwhelmed, exactly how I felt. I decided to take the treatment and have had no side effects. I just saw my hematologist and my platelets have been in the normal range for the four months I’ve been taking HU. I’ve had more energy and in general I’m feeling better. I asked him what my Jak2 allele burden was and he said in Canada they didn’t look at that. I thought that was strange. He didn’t change anything (500mg 5 days a week) and will see me again in 8 months. One never knows what the side effects might bring on but I just wanted to give you at least one instance where none were and health in general improving. I agree with Hunter that you should have your leg checked again and be clear on that diagnosis. Best of luck to you and do know the shock does wear off in time and when the treatment works it is encouraging considering the struggle I think we all go through in the initial stages of this diagnosis.

[ALlady]

I started HU last November for PV with elevated platelets, RBC and WBC. I am 76 and take 1000 daily. I am very active with daily walks, yoga and gardening.

Like you I was terrified to start the drug, but hated phlebotomies even more and of course they only lowered my frightening HCT. HU worked quickly to bring all my counts into normal ranges. I have had no side effects other than drier skin and some itchiness. My sleep and energy levels are improved.

I hope your response will be similar!

[Mardigras]

Hi Zoe,

I was prescribed Hydroxycarbamide about seven year ago. Like you I have ET \Jack 2+. I am 76 now.

I took Hydroxy and baby aspirin until about 18 months ago. Also Simvastatin and Lisinopril for high blood pressure.

For the first couple of years I did not notice the reactions to the drugs, but as the years went by, the reactions to the drugs became unbearable. I believe that the toxicity built up and made me feel dreadful. So much so that I took the decision to stop all my drugs except for baby aspirin. My platelets did not rise that much and still remain at around 550..

The aspirin after so many years made my veins thin and even wringing out the washing made my hands go black.

A new Haematologist encouraged me to try clopidogrel instead of aspirin and I take lansoprazol for heartburn. I think this was caused by over use of aspirin.

I have to say that I feel much better and my life has returned almost to normal.

This is just my story and I would not for one moment suggest than anyone takes such a drastic measure. It suited me though and long may it last.

Good luck to you.

Hugs

Marci

[Zoebowie in reply to Mardigras]

Thanks Marci. I hope you’ll continue to have better health. Time is precious.

[Jamesxyz]

Hi,

Everybody worries before taking this med.

Most people have zero side effects.

I've been on it of 2 years, don't even know I'm taking it.

Stay well.

[SueYoung]

I’m 63 on 1000mg daily for the last year, no side effects yet but my platelets are now under control thankfully.

[Zoebowie in reply to SueYoung]

Good to know thank you

[Phantasia]

I took it for about 7 months but unfortunately experienced hideous peripheral neuropathy in my feet and legs so my haematologist took me off it. Most tolerate it quite well. I was just very unlucky. My platelets didn't reduce anyway, at least not while I was on it. I did notice a drop in my platelets in the months following cessation so it must have stayed in my system for quite a while.

I continue to take 100mg of aspirin daily. I am triple negative ET.

Your age, thrombosis history and JAK2 mutation do indicate that cytoreduction is necessary.

All you can do is try. Hopefully it will work for you without too many issues.

Best of luck.

[Angelinagaffer]

It is scary Zoebowie, it took me ages to take my first pill but once you get it down the hatch you will begin to feel better and life improves becomes brighter and the illness eventually goes to the back of your mind.Drink lots of water 3ltr a day they recommend, occasionally get a 1ltr water high in magnesium and sip on that for the day.

Give your MPN nurse a ring and discuss your fears and concerns, the nurses are very welcoming. They are always there for you. As We are here....😁

Good luck 🤞

Best Wishes

Angelina

[sydunipete]

I went through the same process. The bit about washing your hands after touching the capsules freaked me out. I spoke with a few doctors I trusted, they reassured me.

I’ve now been taking it for 10 years without a single side-effect.

[Zoebowie in reply to sydunipete]

Thank you that’s encouraging news. I’ve just taken my tablet and washed my hands before and after ha ha and have bought disposable gloves and I’m thinking where on earth can I keep this medication to make sure none of my family touch it!! Phew! I can’t wait until I get used to coping with these. 😅

[sydunipete in reply to Zoebowie]

I’ve never bothered with any of that. The only precaution I take is when I use a knife to open the foil seal I put it straight in the dishwasher rather than put it back in the drawer. You’re going to be fine. It is a well-understood, well-tolerated and effective drug.

I’m about to transition to Pegasys and that leaflet is even worse!

[Zoebowie in reply to sydunipete]

Oh dear. I’m sorry to hear that. Good luck for the future

[Mirror368 in reply to Zoebowie]

I have never touched the HU capsule. I slide one onto a small lid, swish water around my mouth, swallow the pill, and finish up with a full glass of water. I have never had mouth ulcers.

Best wishes, Eileen