Hello everyone, I’m a 53 year old male and have recently been diagnosed with Essential thrombocythemia (ET). My platelets and white blood cell have been high for a while and after a recent ultra sound it was discovered I have an enlarged spleen. I have been suffering with fatigue for a while and for 2 years have had horrendous all over body itching for about an hour after taking a shower or coming into contact with water. Prior to diagnosis of Essential thrombocythemia (ET) it was diagnosed with chronic spontaneous urticaria and have been on a high daily dose of antihistamines , which don’t seem to be working.
I’m am due to see a haematologist next week to discuss a way forward for me. I have recently read that 48% of people with Essential thrombocythemia (ET) have a side effect of itching after contact with water. Has anyone else experienced this and have you been given anything to help control this? I have started taking a 75mg of aspirin. My sister who is 7 years younger was also diagnosed with Essential thrombocythemia (ET) during Covid and we both have the Jak2 gene which I believe is rare in siblings as it’s not hereditary.
My sister does not have the post shower itch and I suspect the diagnosis of chronic spontaneous urticaria is incorrect and suspect it’s a side effect of Essential thrombocythemia (ET).
If anyone does have the dreaded itch I would be really interested to hear from you to see if there is anything you do/take to control the itching?
Hi @Drewplymouth I am pleased that you have found us and I hope that others can share the experiences of Essential thrombocythemia (ET) and the side effects they have experienced.
I attach the Blood Cancer UK information ,on itching Itching | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
I will also copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
I look forward to hearing more about you so please do keep posting
Hello @Drewplymouth - glad you have found us here and can touch base with others in similar situations It’s a big learning time when a diagnosis is made isn’t it especially of conditions that are rare and perhaps never heard of before! I am an Essential thrombocythemia (ET) patient diagnosed 18 years or so. The itching you mention is a very typical Essential thrombocythemia (ET) symptom and for many is related to water use and often heat as well can trigger and of course you get both in a shower! Personally Idreadful itching prior to diagnosisand fouisn’t for another - it can be a bit of trial and error too over time to see what helps you. Some basic aids can be reducing time in shower so quick just to be clean and then pat drying rather than lots towel rubbing, using a good cream immediately after some of the oat based like Aveeno again trial and error for one that’s good for you, have good hydration through the day, avoid too much heat from the likes of central heating and in shops (I know I find in winter when I am all coat and scarf and go in the shops I know to take of my coat in the shops to keep heat balance ok) - but really it is a bit of trial and error to find what’s good for you and you will get there and your consultant will assess and help out too. You should be assigned a clinical nurse specialist too who often are the good source of info about the day to day things we may deal with. Also do touch base with the charity Myeloproliferative neoplasms (MPN) Voice lots of info on there including bits about itching! They have lots of online videos too via the team under Prof Harrison at Guys all really good info to keep learning from
Keep us posted how you get on
Hi @Jilly20, Thank you for your email, which contains some really useful information which I will be sure to explore. I will definitely keep you posted with how I get on.
Welcome to the Forum and we do hope that you gain support and reassurance here. I am sorry to hear that you are experiencing itching. Have you spoken to your Haematology team about this yet or are you waiting for your appointment next week? Often if there is significant itching then anti-histamines are prescribed and referral to Dermatology can be considered.
I can see that you have been recommended to read our webpages on Itching where we say that:
We don’t know exactly what causes itching, but it’s possible it may be triggered by a type of cell called a mast cell releasing a substance called histamine. Histamine can affect the activity of small proteins called cytokines, which are known to cause an itchy sensation.
For some people, taking anti-histamines may help to reduce or get rid of the itch. If your itching is caused by cell activity related to your blood cancer, starting treatment can also lessen your symptoms over time, but this may not be immediate."
It would be useful to create a diary around your symptoms in terms of severity and frequency so that your Haematology team can best treat this for you.
There are some tips on how to self manage within the Itching | Blood Cancer UK pages. Theses include:
Having short baths or showers using cool water, before patting yourself dry with a soft thin towel.
Using sensitive or “hypoallergenic” wipes to wash yourself if you can’t bear to get wet.
Covering your skin with a cool damp cloth or wearing a damp t-shirt during a flare-up.
Applying a thin layer of emollient-based moisturiser or lotion (for example E45 cream) as often as you need it.
Lightly pressing, squeezing, or tapping on affected areas of your skin instead of scratching.
Meditating or doing breathing exercises to distract yourself.
Focusing on an activity that keeps your hands busy, such as playing an instrument or drawing.
Applying a menthol-based cream which may help to numb any burning sensations.
Hi Gemma,
Thank you for your email, which obtains some really useful information, which I will discuss at my haematologist appointment next week. Also thank you for the useful links you sent me.
Hey there @Drewplymouth, just wanted to welcome you to the forum as a fellow Myeloproliferative neoplasms (MPN) survivor. I’m sorry to read of your diagnosis and that terrible itchy skin, I really feel for you.
You’ve had such great tips offered already which I can’t add to. Do let us know what helps. My haematologist told me that having thinner blood from taking aspirin means it can get closer to the skin’s surface, which might have something to do with skin sensitivity.
Although I haven’t really experienced the dreaded itchy skin, it has dried out a lot since I started taking daily hydroxyurea for Polycythaemia vera (PV)—a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET). Something that helps minimise the dryness is using an emollient shower gel that’s very mildly soapy but moisturising, and also moisturising well after.
And speaking of closely related, I also have a relative with Essential thrombocythemia (ET) and have been told by my doctors that it’s unlikely to be hereditary. I know of others around the forum who share similarly rare diagnoses with close relatives, maybe have a look around if you’re interested.
Keep us posted about how you get on @Drewplymouth! Glad you found the forum.
It’s a big learning time when a diagnosis is made isn’t it especially of conditions that are rare and perhaps never heard of before! I am an Essential thrombocythemia (ET) patient diagnosed 18 years or so. The itching you mention is a very typical Essential thrombocythemia (ET) symptom and for many is related to water use and often heat as well can trigger and of course you get both in a shower! Personally Idreadful itching prior to diagnosisand fouisn’t for another - it can be a bit of trial and error too over time to see what helps you. Some basic aids can be reducing time in shower so quick just to be clean and then pat drying rather than lots towel rubbing, using a good cream immediately after some of the oat based like Aveeno again trial and error for one that’s good for you, have good hydration through the day, avoid too much heat from the likes of central heating and in shops (I know I find in winter when I am all coat and scarf and go in the shops I know to take of my coat in the shops to keep heat balance ok) - but really it is a bit of trial and error to find what’s good for you and you will get there and your consultant will assess and help out too. You should be assigned a clinical nurse specialist too who often are the good source of info about the day to day things we may deal with. Also do touch base with the charity Myeloproliferative neoplasms (MPN) Voice lots of info on there including bits about itching! They have lots of online videos too via the team under Prof Harrison at Guys all really good info to keep learning from