Hi there, I’ve been diagnosed with JAK2 Essential thrombocythemia (ET), and for about 5 years have been ok on baby aspirin. Recently however my toes go purple if I stand in the same position for long. The haemotologist wants to put me on Hydroxycarbamide but I’m resisting at the moment as I am very sensitive to meds and my platelets are only a small amount above the range. I searched Purple toes and nothing came up, so I think this is a new category. Does anyone have any experience of this?
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A great big welcome to our forum @Maggs I am sorry I cannot help you but I will copy your post to the Blood Cancer UK nurses @LauranBloodCancerUK @GemmaBloodCancerUK and @Heidi_BloodCancerUK and someone on the forum might be able to help you.
Is your haematologist putting you on Hydroxycarbamide because of your purple toes and do they think that there is a link to your diagnosis?
If you would like to speak to someone the Blood Cancer UK support line is there for you.
Look after yourself.
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Hi Erica, and thank you for the warm welcome. Yes the haemotologist seemed to be aware of it, I think she called it dusky toes or something like that. She said when it occurs they usually put people on Hydroxycarbamide. Also my age is another reason, I’m 62yrs this week.
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Hi Maggs, have a brilliant birthday this week, celebrate and enjoy.
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Hi @Maggs & welcome to our forum. I am very pleased you have found us and I hope you are doing okay today?
You ask a really good question. We know that a symptom of ET can often be discolouration of your hands or feet and i am pleased that you have raised this with your haematology team.
It can also be an indicator of how your symptoms are being managed by your current medication and therefore often a clinical decision will be made to potentially alter your medication dose or type. This is always based on your own medical history, individual circumstances, symptoms & risk.
It is understandable that you will have concerns about starting a new drug such as hydroxycarbamide and do continue to share your concerns with your team on this Maggs.
Also know that should you wish to talk anything through with our support team- we are always on hand- Blood cancer information and support by phone and email | Blood Cancer UK
Take Care, Lauran
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Good Afternoon @Maggs
I am glad you have found our Forum and have posted a very valid question, that I am sure others will have experienced, or may be experiencing now.
I suppose toes, skin, fingers etc all come in varying colours and so possibly yours are purple, but Doctors would say ‘blue’, which maybe why you haven’t found any information.
It is great to read that you have been stable on low dose aspirin (baby!) for the last 5 years, but you definitely did the right thing telling your Haematologist you have purple toes.
Medication is usually only offered if the Consultant thinks it is really needed, and whilst you may feel very well and platelets aren’t too high, Hydroxycarbomide will be prescribed as a preventive medication to clots, as well as controlling your platelet counts. Discolouration in hands and feet is one of the symptoms of ET, but it should improve on medication.
Your Haematologist will have to very closely monitor your blood counts once you start Hydroxycarbomide (monthly for a while), so if it doesn’t agree with you, hopefully you will have ample opportunity to discuss other possible treatment options, if you need to stop it.
I am not sure if you have already found this page on MPN Voice, another great UK based charity, specifically for those with ET and other MPN disorders, it does state blue toes in the symptoms list: Essential thrombocythaemia (ET) – MPN Voice
There might be some useful information on the page, to help you with your decisions on treatment too.
Please do get back in touch with us and let us know how you are doing.
Take good care of yourself,
Heidi.
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