Hydroxy

[jodary]

So I took one capsule last night and today have had a headache with a pink face ! I spoke to the mpn nurse who seemed unconcerned especially about my pink face ! More likely to be from the stress I causef myself than a side effect. I have been drinking lots of water !

[mhos61]

It’s more than likely anxiety related. Anxiety is awful, I’ve experienced it in the past too. Your body will be in a heightened state of alert, and particularly sensitive to all bodily functions. So try to remember what you’re experiencing doesn’t necessarily mean it’s side effects of the medication.

When you see your platelets responding positively it will make it all worthwhile. In time you will become less anxious.

Mary 👍xx

[jodary in reply to mhos61]

Bless you. I have been in turmoil all day feeding the anxiety of course. Anxiety is a real curse especially if you do have real health issues as well. X

[mhos61 in reply to jodary]

I totally agree with what you say. We’re all here for you to offload and support you through this. You’re not on your own.

[jodary in reply to mhos61]

I hope you realise how much you have helped me x

[mhos61 in reply to jodary]

🙂xx

[wotan10]

Good .morning and greetings from Fleetwood.

Where you are now on your journey three years ago I was too.

This site is a power house of positive information.

You are not alone in this situation.

Anxiety is a factor that you can overcome especially if you take positive steps to put yourself in a less heightened threat of turmoil.

I found three things really useful.

This process is unique to you, having support from others gives you confidence to explore your day to day emotions that will calm down.

I obtained,a small salt lamp which when switched on at night helped me with my mood swings.

Going for walks released those happy hormones and trained my mind to focus on the job in hand.

The end result was better for me. If you can try to distract your tendency to over react by telling yourself that this is a managed condition I am positive you will feel less agitated.

Finding my happy safe space.in meditations was also a help.

Hope this helps.

[jodary in reply to wotan10]

Thank you. X

[Louise2870]

Hi jodary,

I totally agree with wotan10 Use the support from this forum as often as you need and it will help you accept your new situation.

I find a balance of rest, walking, yoga and breathing helps me immensely. There are loads of great videos on YouTube that can get you started if you’ve never done any kind of yoga 🧘‍♀️ or meditation before. It’s so calming it will definitely help with anxiety.

Don’t worry you’ll be fine👍🏽 Louise x

[michael123]

I dont think it's all anxiety. I turned red too, face hands feet. It can be a side affect I've read it happens alot. So you might be anxious, but it's not all anxiety, it's the hydroxy imo

[Mazcd Partner MPNVoice in reply to michael123]

facial redness redness of fingers, arms, legs or ears is a less common side effect of Hydroxycarbamide, affecting approximately one person in 100 to one person in 1000 = 0.1 - 1%

[jodary in reply to Mazcd]

Would just be my luck but it was nust pink face and after only one capsule. Is it dangerous or is it just temporary.

[Jschwab]

Does it help to know that people have been on tis drug for years and living well, and long? I have recently been diagnosed with ET and it helps me to read about Hydroxy experiences to help get me prepared if I too will be on it soon. My platelettes are in the 900's, so who knows what next blood draw will show. Since I've had ET I get a pink face off and on, especially when I have a glass of wine. That never happened to me before. Someone in my work place has Essential Thrombocypenia, and doesn't make enough platelettes- her are at less than 100! We wish we could swap and balance each other out. But each time I meet someone with a similar experience, or read stories from this site, I feel validated- We are all here to help and cheer each other on! Keep us posted...😊

[jodary in reply to Jschwab]

It does help I just want to be able to have the treatment and not get side effects like most people on here say. X

[lizzziep in reply to jodary]

There will be lots of ET'ers who read this forum and don't have any problems so don't comment that they don't get any side effects. You got a pink face - I get night sweats! It could be connected to the drug, but might be the anxiety. Anxiety is hard to deal with, especially when it has built up over many years. Hope everything settles down for you.

xx

[Planting]

Hi Sorry you are going through anxiety starting treatment. I was there 2 years ago and it’s not nice. Thro support on this forum I now look on hydroxy as my life saver. Any side effect I’ve had so far have been minor compared with the stroke I could well have had without it. Things will settle down I am sure and there’s plenty of information here

planting

[jodary in reply to Planting]

Do side effects go away ? X

[jodary in reply to jodary]

Anxiety is a curse in itself and makes even small things hard to deal with. Was going through a really bad spell and then had to start the treatment. I know thats why I am struggling it makes everything seem so huge. I was hoping for no side effects so I could calm down and ended up with the headache and pink face after on taking only one. Have 2nd to take tonight and am already panicking. X

[Mazcd Partner MPNVoice in reply to jodary]

it's very difficult to say whether or not the side effects will go away, as everyone is different, so some people do get some side effects for the first couple of weeks which then settle down as their body adjusts to the medication, but if side effects continue after a few weeks then it is advisable to discuss with the haematologist about either changing the dose or changing the medication. Have you spoken to your GP about your anxiety, it might help if you do as he/she can advise you on different ways to help. I do understand your anxiety about taking Hydroxycarbamide but it does seem that it is causing you a lot of distress which is not good. Maz

[jodary in reply to Mazcd]

I spoke to the MPN nurse who didn't seem to know it could be a side effect. I am now worried as I only took one 500 capsule. I have seen my gp but I have to come off amitryptiline first before I can try something else. And the cutting down is giving me side effects. I didnt want to start another new tablet at same time as starting treatment. I have also been having problems with my thyroid results being out of whack. I am actually in a bit of a situation ! X

[jodary in reply to Mazcd]

Was also just bit concerned if it was dangerous at all. X

[mhos61]

Are you taking any medication for your anxiety, and also do you have some support? If not, maybe a ‘buddy’ might help you through this challenging period.

Try and put everything into perspective, easier said than done - I know! The facts are you are considered ‘high risk,’ so it’s inevitable that some preventative medication has to be taken. It’s pretty much take the medication, or risk a thrombotic event, which would be foolish.

It would be such a shame not to give hydrea a chance based on trying to differentiate anxiety from ‘possible’ side effects. I would take some comfort in that your CNS wasn’t worried by this.

Mary x

[jodary]

I did until Maz said it was a rare side effect because she didn't seem to know that. I only took one capsule so am now really anxious about a second. Thank you for your kind words. X