Hellooooo...

[JaynieQ]

Evening all! I've been quietly loitering on here for a year or so having been diagnosed with ET in October 2015 but this is my first post. It's been very reassuring to find a support network and to know there are others out there who 'get it'.

I've been very lucky in that I've been mostly asymptomatic but my platelets are now in the 800 region and (double whammy) I turn 60 in a few months so it looks as though HU isn't too far away...

I've recently developed burning hands and feet and sometimes legs and arms which is a bit uncomfortable. Does anyone have any words of wisdom about how to cope with this rather strange symptom?

Thanks for listening folks

Jaynie x

[ChrisAnnSen]

Welcome Jaynie - none of us want to be here but now that we are this is certainly a good place to find out about life as we're experiencing it.

I was diagnosed with ET just over 12 months ago and as I'm older tham you have been on Hydroxy and Aspirin ever since. I've found no identifiable side effects with Hydroxy although there are various symptoms which could quite likely be put down to age.

I too have burning feet - and was experiencing this long before diagnosis - and found that it is less severe these days. Not sure whether that is Hydroxy doing its stuff or the amount of water I'm drinking. Whatever the cause I'm grateful.

Others may have more tips but I'd recommend you talk to your haematologist about it in case s/he has come across this problem before and can advise you.

[JaynieQ in reply to ChrisAnnSen]

Thanks for your reply ChrisAnnSen - as with many of the posts on here, your words have cheered me up no end. Glad to hear your meds are suiting you. Stay well!

Jaynie x

[mhos61 in reply to JaynieQ]

Welcome Jaynie,

I also have ET (Jak2+). October 2015 is when my platelets were flagged as above normal. It was May 2016 when I was given my diagnosis. Because I was age 60 I was immediately commenced on cytoreductive therapy. I was shocked, as I considered myself asymptomatic. However, when I look back, I did suffer burning pain under my left foot on prolonged standing/walking; still do at times, but nowhere nearly as bad. I also encountered visual type auras (once or twice a year at most) and dizziness from time to time. I wrongly assumed this is the type of thing that happens when you age.

I have been on hydrea and aspirin for two years. Significantly, I have had no dizziness during this time. I did have a visual aura on two consecutive days within this two year period - but that’s it. Hydrea works very well for me. It gives me peace of mind that my thrombotic risk has been greatly reduced. I suffer no side effects. More importantly, it has controlled my platelet count on a very low dose. Long may it continue!

Mary x

[Petsch in reply to mhos61]

How low a dose r u on

[mhos61 in reply to Petsch]

One tablet Monday to Friday, weekends free.

[JaynieQ in reply to mhos61]

Thank you for your reply Mary. Stay well! X

[Petsch]

I have burning in arms sometimes. Strange thing is it started when I was put on aspirin which was before I started hydroxy. Told dr and she said that’s not a side effect of aspirin. I don’t believe that. To coincidental. Right now I have stopped my statin for 3 weeks to see if that’s the cause then I will try stopping aspirin. For a couple of weeks if it doesn’t stop. Trial and error

[Jawas]

Hi JaynieQ

sorry to hear about your "erythromelalgia"

You should raise this with your haem and talk to them about effective anti-platelet strategies.

As I understand it this is caused by the platelets building up or pooling near the skin.

At 800 plts you made need two aspririn a day or an alternative anti platelet medicine eg clopidogrel or dipyridamole. You might need to block the cAMP coagulation pathway if you are Calreticulin mutated.

You could also try some of the anti platelet foods/supplements.

But ALWAYS discuss with your haem as you risk a haemorrhage if you go too far.

Good luck this should be solvable.

All the best

Jawas

[JaynieQ in reply to Jawas]

Thanks Jawas! I’m CALR and JAK2 negative but in all honesty I don’t know what that means. I’ve been an ostrich for 2 years but now I’ve got to take my head out of the sand and get clued up! Pretending it isn’t happening won’t make it go away.. I really appreciate you taking the time to reply

Jaynie

[Roger41]

Try to record your symptoms and share it with your team.

I rub olive oil in my hands and have a foot spar every three weeks and this helps me.

[JaynieQ in reply to Roger41]

Thank you Roger41 - I like the idea of a foot spa! 😊

Stay well

Jaynie x