Hi all,first of all, I've been following the forum for quite some time , thank you Maz and everyone helping in here !
I have ET JAK2, 34 years old, roughly around 850 platelets count right now. My situation had been quite stable, been on aspirin since June 2019(diagnosis) but recently I've been feeling an extreme pain (at times) inside by right arm.at first it was around the wrist and it has then quickly developed to the elbow. This is most night keeping me up or waking me. I've tried all sorts of pain killers but it did not help. I've noticed this week as well that my skin on my both hands have been very dried, it's causing the skin to crack and bleed by itself.ive actually been experiencing this for the past 3 to 4 years , usually around the winter time , and sometimes extremely bad.
I know itching is a common symptom to ET, ( I've experienced it in 2018 but then it stopped) but now I actually wondering if the dried skin is not also related to ET...? I'm currently back home to France to visit my family, usually living in Ireland. I've been in touch with my hematologist at the mater hospital Dublin, an x-ray had been done on the wrists but a full check up will be done, especially for the inflammation on my arm. Any idea?
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Maella
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Glad you decided to post and see what others have experienced. While some with ET experience cutaneous symptoms, I have not heard of something like what you describe before resulting directly from the ET. It is worth noting that JAK inhibitors like ruxolitinib are used to treat psoriasis since JAK-STAT regulated inflammation is involved in the disease. Here is one reference on this topic.ncbi.nlm.nih.gov/pmc/articl...
Thanks you for posting this question. It got me to thinking about the role that deregulation of the JAK-STAT pathway plays in various skin conditions. I experience bouts of eczema, which is only one of the systemic inflammation related conditions I experience. I have known for some time that these things are all related. The above referenced article seems to have some good information worth reviewing. It will be another opportunity to learn some more.
Please do continue to let us know what you learn as you look into this matter. We can all benefit from what you learn and share. I hope you find relief soon.
Hey hunter5582 , I was secretly hopping that you'd respond, and I'm so grateful for you to have taken son time to dig into this ! that all actually sounds so much like what I'm experiencing... since always I've had spikes of fever, unknown inflammations, asthma and the list goes on. Here is an example of what I'm currently experiencing on my skin, which is only very little comparing to other times. A friend of my family is oncologist and I've also asked her about the pain felt in the arm, which she qualified as inflammation.
I understand as well that not all symptoms qualify, are identified are relation to MPN or JAK2 But its super interesting.
I'll definitely let you know. I should know more from July 26th onwards, with the visit with my consultant
Thank you so much for your kind, wise and clever words and researches. I find it very often lonely and experiencing at times sort of impostor syndrome with this condition.understanding that this is actually happening and this might all be related is somehow a relief
Glad the reference helped. It is sometimes really hard to sort out what is related and what is unrelated to the MPN. My own take on it is that even "unrelated" conditions can be exacerbated by the continual overproduction of inflammatory cytokines we experience. "Unrelated" inflammatory conditions can also increase thrombocytosis. Our bodies really are inter-related systems. It is why holistic care is so important for us when dealing with MPNs.
I hope you will be able to consult with both a MPN Specialist and a dermatologist ASAP. When dealing with something like you have pictured, requiring the providers to collaborate is essential. It is not optional. You may need to be the one who makes that happen.
FYI - i have had great success with Eucrisa, a PDE4 inhibitor, in treating my eczema. I have no idea whether something like this is appropriate for you skin condition, but do know that there are effective topical agents that may provide relief. I also use ceramide-based cleansers and cream to prevent problems. That has also made a bog difference.
Hi there, from my experience, a dry skin is pretty usual issue during winter affecting many people. I have this too, frequent hand cream application helps. On thing I noticed this worsened when I started Pegasys, it makes skin even dryer and not only on hands.
Regarding you hand pain, you should probably check it with your doctor and exclude blood clot, it can cause pain. Even if you're on aspirin it's better to check than sorry.
I’ve had dry skin for a few years now, roughly from when haematology think my ET started raising my platelets… I have also wondered if there is a connection. Though it could be secondary, like lacking certain nutrients, or that obviously our skin is our largest organ, supplied by our blood, and our blood is not as good quality because of our MPNs. I’ve not had anything as severe or painful as you, I hope you can get it treated and sorted!
Hello Maella, I am so very sorry that you are experiencing this pain and the problems with your skin, I do hope that you get this sorted out when you get back to Ireland. Enjoy your time with your family. Lots of love, Maz x x x
It’s a bit out there but based on this interview I started taking daily antihistamines and my bone pain has eased significantly. Have recommended trying antihistamines to another MPNer on this forum who’s also had great results. Could be worth a try!
Sending best wishes from a grey and rainy Dublin 💚
thank you all so much for taking the time to review my post, share knowledge and kind words, I really appreciate I will definitely consider taking antihistamines IrishSarah thank you so much for sending this over! Regarding the lesions, I will follow your advise hunter5582 and book an appointment with a dermatologist I had checked back a few years ago with my GP, before any diagnosis, and she had prescribed me a cream with cortisone. I don't have it with me in France unfortunately but cleaning up the lesions and putting on a plaster actually helps with the recovering thank you Minu68 for your help as well! I'll let you know guys how it went with my consultant, thank you Mazcd for kind words!!xx
Hey allThank you so much for your help the other week, had my hematologist appointment this morning and we're starting anagrelide. Since I'm 34 years old, she rather have me try that first to hopefully reduce platelets without having side effects of interferon, which I totally agreed upon. Let's see how that goes. The pain in my elbow has developed into my feet, toes, and the list of symptoms goes on. I cannot wait for a relief
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that all actually sounds so much like what I'm experiencing... since always I've had spikes of fever, unknown inflammations, asthma and the list goes on. Here is an example of what I'm currently experiencing on my skin, which is only very little comparing to other times. A friend of my family is oncologist and I've also asked her about the pain felt in the arm, which she qualified as inflammation. 
Many symptoms of ET
ET and raynaud’s symptoms 
ET Diagnosis and symptoms not on list.
struggling with ET symptoms after covid 
