Hydroxy

[jodary]

Well today Ive been given my first box of HU and I will be honest I am terrified . I am very sensitive to medication and get every side effect going. Can anyone else who is also like that offer any encouragement as I am getting myself in a real stew about it.

[Hidden]

I know x. I was devastated and so scared to take the first capsules. But Jodary 8 years on they are prob saving my life. Still here. Still Winning. Take the crap by the horns. Take yor Meds. Speak to u on here years down the line. Dont let this affect you cos I know have let it for yrs and still here I have wasted so much time with what if and affected those I love too x. Always someone worse off. Kick it in butt. Positive thinking U can do it xxx. Best Wishes x

[jodary in reply to Hidden]

I will read your reply every time I feel scared or sorry for myself fthank you x

[mhos61]

I totally agree with Abbamania.

Most people tolerate this drug well. I have been on it for three years, no adverse side effects whatsoever, apart from a few mouth ulcers at the beginning of treatment. That soon settled down. Think of it as a protector from potential thrombotic events, something you want to avoid at all costs.

Taking the first tablet is the worst part. I think most of us have felt like this. Try not to be too anxious as that can cause physical symptoms, which you may confuse as being side effects.

Taking this tablet will soon becomes part of your daily routine. I’m sure you’ll be fine!

Mary x

[jodary in reply to mhos61]

Thank you so much. I am hust so sensitive to any medication x

[Helena303]

I started mine 6 months ago.

[Rachelthepotter]

I agree with what the others have said. Logically, its a question of balancing the risks of the side effects of the drug ( and you may or may not get any) against the health risks of remaining untreated.

And that’s a no brainer, especially as the dose can be tweaked. BUT I do remember that it was a huge emotional step for me to start taking HU, even tho the benefits looked like far outweighing the risks It meant accepting that I had a disease serious enough to warrant this not very pleasant sounding medication. Not a happy place to be. But I did take it. And , when I found I couldn’t tolerate it, I was switched to another drug.

Give it a go, and keep in touch with your nurse/ harm and let them know about side effects. Writing them down in a diary helps.

All the best

Rachel

[jodary in reply to Rachelthepotter]

I really hope I can tolerate it. Thank you x

[WileyFrench]

As others have been saying, that first step is a big one. I have been taking HU for almost a year and really no side effects that I can determine, other than maybe a bit of gout from elevated uric acid levels, but gout can be controlled. My platelets have come into normal range, and I just saw my haemo today and have moved from having blood work every two weeks, to going to every six weeks, and he doesn't want to see me again for another six months. So after the initial shock wears off, and the first couple of months pass, I imagine you'll be like the vast majority of us: just carrying on a regular life, taking a pill just like diabetics take insulin (for life), and you'll be offering your experiences on here to help others!

[jodary in reply to WileyFrench]

That puts it into perspective x

[Trocken]

I took my first tablet last Friday, all has been great with no side effects, I do feel like I’ve been hit by a bus at the end of the day, but that said I have a very busy life with young kids and work, and my body obviously needs time to adjust.

Like others have said the benefits out-way the potential side effects, and they are just that potential side effects. If we don’t try them we will never know, your consultant will be keeping a close eye on you, try not to worry, I’m treating them the same way I do about taking aspirin!

Xxx

[jodary in reply to Trocken]

Amazing and with children too, feel quite ashamed x

[UKZA]

I felt the same, as I have always been reluctant to take any meds as I seem really sensitive to them. I decided to give it s go as my platelets had risen to 1300 and water nearing what my haematologist deemed a critical stage for me. So started on a low dose, but admit to a mini melt down on the first pill! I can honestly say that I don’t know what the fuss was about, yes I get fatigued and yes I have bad days, but on a whole life is as good as I make it. Platelets are down to 650 after 6 months. My dose has doubled as I managed better. I still don’t like the idea of the meds, but for now I am healthy and positive. Best of luck, the worst part is in the mind x

[jodary in reply to UKZA]

Inspirational Im feeling better x

[JojoWonder]

I completely understand as my Haematologist really pushed Pegasys only for it not to reduce my platelets at all and for us to have to add HU anyway. I have had no real side effects and my platelets have halfed with the first month.

I hope it works as well for you x

[Bridie123]

Hi there, I'm very like that. So much so, that one of my medications ( nothing to do with ET ) is in liquid form so I can adjust the dosage to ease the sideaffects when they get too much, so I do understand.

With the hydroxy, I find that a few are with me almost constantly but others seem to take it in turns in tormenting me. What I have to keep in mind is if I stop taking them I run the risk of having a stroke and being a burden to my family. On the whole, drink enough water to fill a pond every day and don't think about it all the time and you might find it's like having a disagreeable relative visit, you put up with it.

😂😉🤗

[Garstongal]

I started on 7 Hydroxy tablets a week and am now up to 17 a week, all of which I take before bedtime so I can sleep through any potential ill effects. Side effects have not worsened. In fact, the more water I drink, the less fatigue I feel, so my only advice to you would be drink, drink and drink even more...worth a try and hopefully it may help you too. Good luck x

[jodary]

Thank you everyone fingers crossed x

[Cja1956]

I understand how you feel. I hated the thought of taking hu but I’ve been on it now for 11 years. I can’t say there haven’t been side effects like fatigue and dizziness but I just tell my hemo and he adjusts the dosage accordingly. It will be fine. Drinking lots of water helps. I agree with Abbamania. It probably saved my life.

[MiltonBradley]

Hi Jodary,

I was right there with you a little over 1 year ago when I was diagnosed with ET Jak2+ following a mild heart attack:/ When I was told I would have to go on a chemo pill for life I freaked out. It took me 3 days from filling prescription to take it. My husband called everyday to check if I took it My family tend to have all kinds of reactions to meds, too. Well, since swallowing that first pill I have had no other side affect other than a little fatigue. My platelets have gone from 1 million to 311,000. I have my hematologist appointment tomorrow to check blood again. It was adjusted once; I take 500mg most days and 3 days a week 1,000mg. I trust you will be fine and more comfortable taking the meds instead of having another heart attack or stroke.

[Wesleygrange2a]

Hi I felt worried about taking the medication but 13 years later I’m still taking them every day. I am 63 years old, work full time and have never had a day off because of my condition.

[Wyebird]

I couldn’t wait to take them as I was in fear of a stroke. They will start you off on a low dose. Think on the positive side. Once your platelets drop you will feel better and at a lower risk of having a stroke/ heart attack.

Try not to worry

[Lemon123]

Hi Jodary, just popping up to second what others have said. I was diagnosed with ET Jak2+ last May, and up until 5 weeks ago I was on a baby aspirin every day. My last visit to the Haemo showed my platelets had gone up to a ''higher risk'' level, so I've been one tablet of Hydroxy a day since then, I go back on Friday to see how I'm getting on. It felt really very odd to come out of the hospital carrying the tablets and thinking about actually taking them, but I decided if it has to be done, it has to be done. So it's part of my daily routine now. My husband is diabetic, and takes his medication in tablet form, so we refer to ourselves as a pair of maracas, we rattle! All joking aside, it is scary to begin with, but if it means keeping those pesky platelets under control, then it's for the very best. As others have said, try not to worry, drink plenty of water, and here's to a bright future for us all. Every good wish for the future.

[jodary in reply to Lemon123]

Thank you x

[hunter5582]

As you can see from the other responses, many people tolerate HU just fine. Others do not. I had to come off HU as not a good match for me. But you can relax. Even if you are HU intolerant, the side effects usually go away when you d/c the med. There are other options if need be. Just work with your doc and be sure to speak up if there are issues. Do your research and understand the risks, but do not scare the dickens out of yourself. Just use good sense and take appropriate measures - drink plenty of water, support your immune system - avoid contact with contagious disease and live vaccines, and monitor for the more serious side effects. HU is teratogenic so avoid pregnancy whether male or female. When you read through all of the risks it is really scarey, but all of these meds have their risks. Keep working with your doc and know that most of us with MPNs live long lives and work through the issues we do face. All the best to you.

[jodary in reply to hunter5582]

Thank you x

[Anag]

Hi Jodary,

I’m one of those thin skinned people who feel and react to everything. Others don’t understand us. Society should look at us as testers to know that the world is terribly toxic. Most often, people like us don’t detox well. It takes longer for our bodies to clean themselves, therefore the med is in us longer and so is every preservative, flavouring, paraffin, xenoestrogens, mercury, and the list is endless. We usually need less med for the same treatment as other do.

Here’s my advice and I only give it because I have resurrected from my intolerances, autoimmune conditions, sensitivities, life long off-on depression, obesity, anxiety and a collapsed body. Try to eat only whole foods, nothing processed, get rid of all chemicals in your diet, cosmetics, soaps and creams, cleaning agents, air, water, etc. I think you understand my point. I am stronger and happier now at 54 than I was at 40. Start slowly step by step and reduce the toxic load that has caused your bucket to overflow. The HU will add to that, but you need that. It’s simple mathematics. You need to reduce toxic load. Take nice walks, have fun, meditate in a way that you like. Within 6 months you will not believe what happens to you body and soul. I will be on my AutoImmune Paleo diet the rest of my life. It’s tailored to me a bit. No carbs, just rice and some oats. No milk products. Lots of great fats. Olive oil, Omega 3, avocados, grass fed organic butter, coconut oil. I eat more cals than before and have lost 16 kg. I never thought that would happen. Perhaps another diet is better for you, though. Important is organic. Please look up doctors like Tom O’Bryan, Mark Hyman, Dieter Klingelhardt. You will get clues and find yourself in there. There is good material in internet to help you understand your sensitivities! Don’t be afraid of HU. All of us are not crazy about our meds, but they are a necessary evil that does benefit us. Do what you must do and if there are problems, solve them with your doctor. Also, because you are sensitive, think about finding a good functional doctor and dietician to look at you holistically. Unfortunately, Western medicine has left this important nutrition chapter out of the universities. I wish you a good start and that this will work well for you. You will see, there’s a lot that you can do! And we are here for you. All the best! Good night. 🙂