MPN Voice
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Just starting out on hydroxy

I’ve been diagnosed with ET, and have had the full barrage of tests from blood work through MRI. When the Canadian health care system kicks in it really kicks in! It’s likelyI had a small TIA a couple of months ago and have platelet count of 660 consistently over the past year. I’m 62 and am very healthy and active. Im to start taking hydroxy this week - 1 tablet per day - and I keep trying not to worry and not to be scared but I still am. Iknow I don’t want to have a stroke, so I’ll take it. But I’m worried about side effects. This forum seems so reasonable and helpful.

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Hi WileyFrench,

Firstly, welcome to the forum which you will find helpful and educational.

I’m really sorry to hear of your diagnosis of ET. In regards to commencing hydrea, I think most of us taking hydrea can initially relate to having mixed feelings.

I was 60 when diagnosed with ET which automatically put me into the high risk group. I certainly didn’t like the idea of taking hydrea, particularly as my platelets were only 500. I was convinced then it was just about the ‘numbers,’ hence my reluctance! I now know that it’s also about the quality/ stickiness of platelets.

My haematologist explained to me at the time about the risk of stroke and the potential disabilities that can arise if one survives. That frightened me enough to commence treatment. I have been on hydrea now for two years (one tablet daily Monday to Friday), my counts remain in range at around 370. I have had no side effects whatsoever, apart from the first couple of weeks when I had a couple of mouth ulcers. It is tolerated well in most people, I’m sure you’ll be fine.

It’s great that you have such a good health care system in Canada. My son works in Vancouver and recently had to use the health care system. Both he and I were well impressed.

Good luck, and keep us updated

Mary x

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Thank you Mary. Your advice and words are SO welcome. There is such a lot written about the side effects that I was making myself crazy. I was very relieved when I found this forum because everyone sounded very calm. It’s very reassuring. And because of vanity, the “hair loss” potential side effect was jumping out at me! I’m hoping to be like you and have almost none of the “potentials”.

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Hi

I have MF, although until the bone marrow biopsy was done the diagnosis was ET and I was started on hydroxycarbamide. This disagreed with me so I was switched to ruxolitinib. .

But I did have a look at the health side effect profile of hydroxycarbamide and thought that the benefits very much outweighed the risks

This website mpnresearchfoundation.org/E...

is a good place to go for clear info on current treatment options.

Its North American based, and not run by a drug company.

The research world of MPNs is a small one, and genuinely international. Lots of activity going on. Bodes well for the future

I hope that you find the info you need to help you with making decisions about treatments.

Do keep posting: the early days can be baffling, but it sounds as tho you are in good hands.

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Thanks for your reply - and for the link to the website. I’ve now checked it out and it seems to be full of useful information. I didn’t know about it before, so thanks again!

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Hi. Know exactly where you are coming from! I was really anti medication for years and determined to keep off it for as long as my haem deemed sensible. Ultimately with a platelet count of 1700 starting on Hydroxy was a no brainer. In the event all my angst about commencing drug treatment came to nought. I’ve experienced no side effects and my counts have tumbled. Within a matter of months - and by adding in an extra tab a week - just about all my counts are within normal range (I have PV). The reality is that the overwhelming majority of people tolerate Hydroxy very well and it’s benefits are great. Hope all goes well for you.

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Thank you for your reply - it is really helpful, and it seems that the “no side effects” results are more often the case. Once I start the Hydroxyurea this week I’ll keep you posted. Thanks again for replying.

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Hi

Welcome to our group, it’s good to have you with us although I wish you didn’t have an MPN. I too was concerned about the drug but after almost dying from blood clots filling both my lungs, I realized the benefits far outweigh the problems. If you have side effects, write & ask us for advice. And although I seriously doubt this will happen, if there’s no solution and your side effects are a real problem, your doc can switch you to a different treatment. Hydroxyurea is used most often as it causes the fewest problems for most. Good luck and take care. Katie

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Thanks Katie. This is making me feel a lot better! I will keep everyone posted and hopefully I’ll be like you and just have the benefits of the drug.

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This is going to seem really trivial but: I’m hoping that I can still enjoy my wine. Does anyone have thoughts about that?

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You can still drink when on Hydroxy. I do., just keep well hydrated 😁😁

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That’s a lovely bit of news! Thank you very much.

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Sorry to be a bother with all my questions, but is anyone taking Hydroxyurea also taking Clopidogrel (brand name Plavix), which is an anti-coagulant? I’ve been prescribed that as well as the hydroxy, and am supposed to start it today.

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Hi,

I was taking aspirin from diagnosis 12 years ago. About 6 years ago I had a major stomach bleed and was changed to clopidogrel as it is kinder on the stomach. It does the same job as aspirin.

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I am SO glad I found this forum! You’re all so helpful and calm - general “research” on the Internet was scaring the heck out of me. Sounds like you’ve been taking both clopidigrel and hydroxy with no bad effects, which I’m happy to hear - both for you and for how I hope to be my case. Are you able to still have drinks? Assuming you did before and want to of course!

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My haem said I could have the occasional cocktail without any ill effects. Since being diagnosed with ET in March, I’ve been to parties and weddings where I drank more than 3 cocktails and had no problems at all. As a matter of fact before being diagnosed, I would get violently sick every time I had more than 2 -3 drinks & just thought that was part of getting older. It was horrible. But now I think the undiagnosed ET & high platelets made alcohol almost like a poison in my body. Because since being on HU & having my platelets come down, I can tolerate alcohol again. Woohoo. lol.

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Woo hoo indeed! Thank you so much.

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Hi WileyFrench, welcome to our forum, I am pleased that you have found us, I can see you have had lots of very helpful replies about taking Hydroxycarbamide and Plavix. We can all understand your feelings, this is how we all feel, I myself have been taking Hydroxycarbamide now for 10 years and have been fine, and am happy to take it as I know it is controlling my platelets and helping to prevent strokes and heart attacks, though when I was told I had to start taking it, I cried and it took me ages to swallow the first tablet, but now it's just part of my daily routine, and I don't glow in the dark, my hair hasn't fallen out, despite constant bleaching and colouring it blue (yes, really I do have blue hair!) and I've had tattoos since being on it, and all fine. Have a look at the information on our website mpnvoice.org.uk, it has all been written by leading experts with input from specialist nurses and patients themselves, we have some really useful patient stories and videos and also, check out our Youtube channel, you will see all the presentations from our biennial Living with MPNs Day 2017 on there youtube.com/channel/UC-S_Ic...

Best wishes, Maz

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Hello Maz - thank you SO much for your reply. You can't imagine (well, I guess you can!) how helpful it is. I am trying not to cry, and not to just be so anxious, and to know that you and others have been exactly there - but have come out on the other side, and are doing well, means the world. Do you take 1 hydroxy per day, and has it always been that way? That's what I'm set to take, and I know it's a low dose (the lowest possible I think), so I was hoping that things like hair falling out would not happen to me. I'm glad to see that you have all your blue hair - it looks great! I have been checking out the website, and it's really good - the best I've found. (And that's the other thing, I really need to stop obsessively checking the Internet for random information). I'll also check the youtube channel you suggest, too. I live in a place that doesn't have an MPN support group, so this forum is currently filling that role brilliantly. Thank you again - so much.

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Hi WileyFrench, you are more than welcome, try not to cry but don't beat yourself up if you do, it is allowed, you can feel sorry for yourself and anxious, we all do. I take one tablet one day and two the next, have been on that regime for quite a few years now, but it can and does change for people, it will depend on your platelet count, so don't worry if you have your dose changed at any time, that is why you will be monitored regularly. Just remember that this will all take time to come to terms with and understand and don't put pressure on yourself to understand it all at once. The advice I always give at forums and on here, is if you are feeling down and despondent about it all, take time for yourself and indulge, treat yourself to something you enjoy, my fix for when I am feeling fed up about my ET is to have a tub of Ben and Jerry's, in my opinion the best 'medication' currently available for feeling fed-up, or a box of cream cakes, or a HUGE bar of chocolate. As you can probably tell, my diet is not always that healthy!!!! Maz x x

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Wonderful advice, and thank you again. My platelet count is mid 600s and has been for the past year and a half or so, and of course I'm hoping that when I start the hydroxy (deep breath here), the level will go down. I'll give myself the okay to feel worried, but also to know that life is just fine - normal, really - for probably the majority with ET, and I'll believe that I'll be one of those people too. Eating ice cream, and drinking white wine, and enjoying life. Another deep breath here.

Leigh xx

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Hi, wileyfrench & welcome u wil find this site invaluable & a good source of information & also inspirational 2 u, i wish i ad found it myself wen i woz 1st diagnosed 10rs ago.did ur haemo tell u if u ad 1 of the gene mutations, ie, jak2+ ? Atb 2 u. tico.

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Hi Tico - thanks for the kind welcome. Come to think of it, I don’t think the haemo did say if I had one of the gene mutations, just that I have ET, after my bone marrow biopsy. I am going to ask him when I see him in September. Would it make a difference if I do or don’t have a mutation?

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