Hydro and sun

[Elab]

Hi was wondering if everyone know if you can #enjoy the sun # more after stopping hydro.

I stopped it almost one week ago. ( been taking it for 2 months one tablet a day)

Many thanks

Ela

[jillydabrat]

Hi Ela

The most important thing to ask is why you stopped taking the Hydroxy? Was it under medical advice? Secondly, I think you should contact your consultant's secretary who can give you, or find for you, the answer to your question about going into the sun. Take care, Jill

[Elab in reply to jillydabrat]

Hi Jill,

Many thanks for your message.

Yes ofcourse, it was under medical advice that I stopped hydro.

I also contacted my hemo nurse but still waiting for her response.

I know everyone is different but thought I would get the answer quicker here as thought someone was in the same situation.

In a meantime I staying away from the sunshine ☀️ just in case.

Have a good day

Ela

[JackLina in reply to Elab]

Hi Jill

Very interested to find about you stopping Hydroxy. Do you still feel some of the side effects? I feel as though it's still in there and giving me grief. Much less than it was but very slow to leave my system (it seems). I can't wait until it goes completely.

I wish you well.

Penelope

[Elab in reply to JackLina]

Hi ,

I stopped hydro ( under medical advice) last wed. I was taking it for 2 months to lower my platelets levels. 1200 before and 600 after the treatment.

First couple of days I didn’t feel great v tired headache and dizziness. It was not nice.

But from Bank Holiday Monday I felt completely normal ( 😊).

What a relief to know that it is still possible to feel like a normal human being.

Hope you will feel much better soon

Keep in touch

Ela

[JackLina in reply to Elab]

This baffles me because I have never had platelets anywhere near 600. In fact, the last count was 440 so I cannot understand why there is such an insistence that I should be taking hydroxy.

Good to know that I have a chance of getting back to 'my' normal. I am more debilitated now by worrying about the condition and stressing over what the doctor says. I wish I had never known about the ET and JAK2.

Stay well and keep in touch. Please.

[Elab in reply to JackLina]

Hi,

I know it’s hard some days very hard.

But there are days where you will feel more positive and almost normal.....just like me. Sometimes I am just pretending I haven’t got this condition.trying to keep myself busy doing things so don’t think to much about my health.

Everyone is different with chemo etc. When I was first diagnosed with E.T three months ago I was told I will be having interferon.

But on my next app doc informed me that I will be staring Hydro......to lower my platelets. And as soon as my platelets are acceptable level the chemo will stop. He was very keep to stop my chemo ASAP because of my age. I am 41 this year.

Still confused like you why some people have just interferon and some hydro.

I also have been diagnosed with pre Myelofibrosis last wed.

No treatment as yet. Have got doc app on the 27th but called my nurse today to check why I need to wait so long as I not only have E.T but pre Myelofibrosis?

So far no call back but will wait patiently.

Speak soon

Ela

[JackLina in reply to Elab]

Thank you so much for emailing me with this. I am finding it really difficult to retain the positive outlook because I just don't know. I have been responding badly to every drug that is meant to help me (I am managing to keep up the clopidogrel thank goodness) and feel I am being treated as if I'm just awkward.

Today was a good day. Happy, smiley and getting on with things. Maybe it's because I started takiing the Magnesium recommended on here. It's having a good effect and so thank you to the person who recommended it.

My heart goes out to you. All the best with your ongoing treatment.

I'll try to be patient. All the best Penelope

[Roger41]

I go for a Nordic walk 5k. Weekly.

No return of the sweat rash either

I use factor 50.

I get my vitamin d I have had no trouble with my skin as yet.

In fact my skin is in good condition.

In fact I appear to be tanning better.I do use an essence oil base too which seems to stop burning.

[Folly41]

My wife took hydro for a short period when she was first found she had ET four years ago.

Hydro was not suitable, since when she finds she has to avoid the sun.

She has recently purchased a sun hat, which has a UV protection of 50. It is early days but she found it to be a great help. This can be purchased from TJ

Max, which is the bigger shopping centres.

Hope this of help.