Itching (pruritus) with ET?

[Solyesh]

Happy New Year! New here - recently diagnosed w suspected ET (platelets 740 - 980 over past three years). Found out am jak2 v617f positive - did a bone marrow biopsy (hope to have results later this week). All other RBC measures in normal range (hemoglobin, hematocrit, volume and mass, iron, PTT, INR, PT), WBC slightly elevated at 11,000-12,000 in recent readings; EPO very low 1.5.

Have been on daily aspirin for last 5 years (first elevated platelet reading at 45 years old) but nothing else. Will find out more with biopsy results (hematologist says will help define which MPN I have although given blood work and platelet levels he really thinks it is primary ET (for now). No other symptoms but recently, in last week, have had itching (was bad enough last night that it made it hard to sleep) - wasn't aquatic pruritus (didn't happen after a shower) and is not constant. No other changes (laundry detergent; clothing etc.). took an antihistamine and not sure it helped much.

I know pruritus is a more common symptom with PV but wondering if those with diagnosed ET have also experienced it? Will know more later this week when I meet with the hematologist but was just wondering if this is something others have experienced.

Thanks!

[Windy51]

Good luck with it all

[ciye]

I have ET and find itching a real issue mostly on my face, red patches followed by red spots then flaky skin.

[moo196]

Have you spoken to a dermatology specialist? Wish I had consulted one much sooner.

[Jenny_F]

Hi I have ET and get itching now and again so think its part of the condition

[Chicagopv]

Hi--I was diagnosed with ET and had itching; later my hematologist thought I had PV all along. In any case, my first symptom was itching after taking a shower. I take hydroxyzine when it's bad. Being on Jakafi has really helped! For a few years I also did light treatments. This is all in the US.

[Peterwi]

Hi, I have ET and has suffered from itching the last couple of months. I saw my haematologist to day. She said that it is one of many symptoms of ET. The only advice she could give was trying different types of antihistamine and maybe change washing powder.

[Minu68]

Hi, I have ET and do get itchy skin regardless of water contact or not. I use dermol cream, prescribed by my doctor, and this has been keeping it at bay mostly. I was diagnosed a year ago, but they think I have been undiagnosed for some years. The itchy skin starting relates closely to when haematology think my Jak2 gene mutated. I had been told different possible reason for the itchyness over the years, but hindsight suggests it has been an ET symptom, like my nightsweats and fatigue too. This forum is great for getting people's experiences, and it is here I found out most about my symptoms and my condition.

Keep safe x

[Murdoch01]

I have the same and have been itching for years. Sometimes I can go for weeks without itching and then it starts again and nothing seems to work. Some people think it is the disease itself, others think it is the chemo medication and the Hematologist doesn’t really know either. The only thing that works for me is getting that area cold, I run cold water on the area and sit with an ice pack on it, i even lay in bed with an ice pack on my arm so that I can fall asleep. Good luck

[BeckyG88 in reply to Murdoch01]

This is literally the same for me, it can be on and off some days mostly nights, some worse then others. I find sleeping with nothing touching my skin and being cool to touch really helps Iv had many sleepless nights because of this.

But you do adapt and work out what helps for you.

[hunter5582]

Pruritis can occur for a number of reasons. Changes in temperature is just one of the reasons. It is related to an abnormality in histamine levels related to deregulation of the JAK-STAT pathway. You note slightly elevated WBC, so it is not a big surprise that you might encounter the dreaded itch. I expect you are already aware of the possibility of masked PV given the detailed account you gave of your labs. You hematologist will work this all out once you BMB results are complete.

Meanwhile, symptom management is important. One option for topical use is Eucrisa, a PDE4 inhibitor. It is prescribed for eczema, but my dermatologist indicated it would work for pruritis too. Long-term, if the pruritis continues to be an issue, Ruxolitinib is considered the most effective for controlling the pruritis.

Hope you get your answers soon. Please do let us know how you get on.

[azaelea]

Yes Solyesh, I have itching as you describe. I have ET JAK 2 +. Itching drives me mad. I get it all over but not all the time. Legs, ankles, hips back, hands and wrists. One place at a time thank goodness. I have some Eumovate ointment which helps sometimes but that’s mainly for Eczema I think. I think it could be an allergy to Hydroxy. Are you on this. Regards Fran

[Pte82]

Solyesh, try liposomal curcumin and liposomal vitamin C three times a day . 12 mg of Astaxanthin twice a day. Alway consult with your health care professional before using any supplement.

[Solyesh]

Thank you to you all for your answers/advice and welcome. Spoke with the Hematologist this evening. After the BM biopsy analysis they have determined (for now) it is ET. They too wanted to rule out masked PV and had three different specialists analyze the biopsy results. They all came back with the same finding of primary ET - which is consistent with the platelet levels and remaining lab results (although the low EPO was one of the reasons they wanted reassurance).He did emphasize that all MPNs are related and at times present differently or can shift how they manifest (ET, PV, MF). no fibroids in bone marrow - so for now we will continue on the low aspirin (they consider me low risk given (age ≤ 60 years, no thrombosis history, JAK2 mutation present) (without JAK2 would be very low).

He was not worried about the elevated WBC (I was) but did say that the itching can be present at times. I have an appointment with a dermatologist for additional follow up and with my hematologist once every quarter for labs and physical check (to follow any potential splenomegaly).

Feel like I am in good hands (the hematologist is also an MPN expert and head of the hematology department at a large teaching university) but the information, experiences and resources here have already proven invaluable!

[Mica11]

This was one of my symptoms prior to diagnosis of ET, both my forearms had to be raked with my nails but still no relief, nothing visual. Can't remember having it in the 3+ years since treatment began, so maybe linked for me by high platelet numbers.