next question is about itchiness

[Carthe]

can people tell me a bit more about this… does it just happen after baths / showers or other times too and where is is generalised or in specific places? I have itchy inside of elbows that’s all and only sometimes - advice is gratefully appreciated

[Cat1001954]

hi I get random itchy like you inside elbows but mainly legs arms and scalp there’s times when I want to rip myself to pieces

[Carthe in reply to Cat1001954]

thanks for replying can I ask any other side effects and also what your platelets are etc? I’m 46 so very worried

[Carthe in reply to Carthe]

for example my arm is quite red in an almost circular shape. Doesn’t itch all the time and my platelets are only 460ish - it hadn’t itched for about 2 weeks now?!

Photo of inside of elbow with red ring showing on skin

[Cat1001954 in reply to Carthe]

looks ok to me similar to when my arm itches same place try not to worry as stress makes it feel worse

[Cat1001954 in reply to Carthe]

I’m. Am Cathy I’m 69. Only got diagnosis last august so I’m newish to this I get itchy skin sometimes total fatigue. Be careful if on blood thinners I bruise so easy and they take forever to go. And headaches sometimes but I just plod along day to day some days are better than others just go with the flow on this journey hope it helps I’m on oral chemo hydroxycabamide

[Carthe in reply to Cat1001954]

hi Cathy what were your symptoms before and platelets etc? thanks for replying I really appreciate it x

[SoledadBarcelona in reply to Carthe]

What are you taking as a traitment? It is due to dragón thyroide problems, sometimes. A diet lower in histamine helps, at least in my case.

[Ginger1017 in reply to Cat1001954]

That seemed to be my first symptom of PV. Went to a dermatologist where she noticed blood counts were high. The itching was so bad... Everywhere!!! She gave me Prednisone shot and it went away. Prednisone for 19 days!!!

[Carthe in reply to Ginger1017]

thanks ginger and when you say hi what are we talking?? Just trying to gage if mine is blood or something else!?!

[Ginger1017 in reply to Carthe]

I'm in America so Im not sure if blood tests are different? The RBC was 2points over norm and same as hemocrit. Sad that it took the dermatologist to think this thru

[Cat1001954]

it’s ok I kept getting utis and blood in urine so after about a year they sent me to heamatolgiist and then I had bone marrow biopsy to confirm my triple negative ET. Also they told me I had had it for 2 years without me knowing but before chemo drugs my fatigue was horrendous I could sleep all day

[Carthe in reply to Cat1001954]

does your itching look like mine?

[Cat1001954]

my platelets were 596 and now at the mo they are416

[Cat1001954 in reply to Cat1001954]

I have regular blood tests a few days or a week before seeing my heamatologist and he checks the numbers to make sure they are all ok

[Carthe]

I keep hearing about the fatigue before diagnosis. I’m glad the drugs are working and your platelets are down! That’s good news!

[Cat1001954 in reply to Carthe]

I just plod along S each day comes the fatigue is not as bad now I’m on drugs but I do get days when I’m wiped out but not everyday

[Carthe]

Does where you itch look similar to mine?

[Jody00]

Hi Carthe, am 44 years old ,I get itchy skin on my body sometimes with a rash too depending on much I itch in the same spot mainly o does gers om my nerves at times but think u can get some cream from the doctors for itchy skin Xx

[Jody00 in reply to Jody00]

Sorry my keypad on my phone typing different letters in supposed put does gets on my nerves lolXx

[Carthe]

thanks Jody / is it in random places or one particular place? Is yours associated with water? Did you have other symptoms before you were diagnosed?

[Winchie]

This happens to me at night sometimes. I wake up from my arms itching and sometimes my back. I just want to scratch all over. It doesn’t happen often but I’ve had this symptom for years. I don’t know if it’s related to ET. It happened last night. I was waking up every hour running to the bathroom and did not sleep well at all. I am using a wash detergent for sensitive skin so that can’t be the problem. I have very sensitive skin. I know I drank too much water late night evening last night.

[21Rosie]

hi Carthe

I have PV Jak2+ ….diagnosed 18months ago and currently Pegasys 67mcg .

I suffer from pruritis too. It’s very challenging and can happen after showers or if I’m unlucky any old time. It seems to be worse for me if the weather is hot and humid. I tried OTC antihistamines without relief. My haematologist suggested I try Beta Alinine - an amino acid easily available at pharmacies - 1/3 teaspoon in water half hour before showering (tasteless) and hallelujah it worked . As I live in Australia and it’s very very hot here at the moment I find I might need to use it a couple of time a day as the itch can be on my legs, neck, back ….very frustrating.

Many others here have also found BA to be very effective for them. Creams don’t work because the itch is from an internal source i.e. our MPNs.

Feel for you and hope you get some relief soon.

Rosie

[Itch]

Hello, I have found the antihistamine, Fexofenadine 120 mg twice daily to be the only thing that eases my extreme itching. Previously have tried so many others with no relief. I can only describe it as so much more than itching with burning, stabbing and a feeling of wanting to tear at my skin. For me it was only on my arms, sometimes one specific area by my elbow; it’s not related to water for me. Plenty of moisturiser regularly & drinking water regularly also help. All the best, Susie

[Channick]

my itch is mainly on my arms and neck and is definitely worse at night but can happen anytime. I’ve just started using Vaseline moisturiser on my arms and have already noticed a difference for the better. It is very humid here and I think that makes it worse for me. Hope you find something that works for you

[Murdoch01]

My itching is just on my right arm, started itching even before diagnoses and meds so I believe it is the ET and not the meds myself but who knows? The only thing that helps me is ice packs.

[Blonde25]

I have had sensitive skin for years .I'm on fexofenadine , I didn't realize my symptoms were to do with PV . Put most of the symptoms down to the menopause. Im 65 in may and was diagnosed in December 2022 they said I have had PV symptoms for at least 5 to 8 years .The fatigue is the worst symptom for me and throbbing aching legs .

I use fairy non bio and fairy comfort to wash my clothes ,I've used this for years now .

I also use hydromol moisturizer for my skin . This helps me with the itching .

Try not to get over anxious because this doesn't help with your symptoms

Good luck x

[ainslie]

generally MPN itch is worst post water, can also happen throughout the day , can be what I call mild background itch from time to time and then there are itch attacks which can come on any time, not pleasant. The fact you only itch on inside of elbow makes me wonder if it is a MPN itch or not, it may be worth seeing a dermatologist to check

[Mirror368]

I have had scalp psoriasis after getting ting many vaccines and that really itches. Also, recently I am getting strange kinks in my feet and I exercise the feeling away.

I guess ET, PV and Hydroxyurea can cause strange sensations.

Try not to scratch. Eileen

[Lena70]

I take an antihistamine (Claritin) and famitodine (Pepcid) daily to control itching. I still get itchy sometimes, but it isn’t as bad as it was.

[william-Indo]

You may take Zyrtec if the itchy unbearable

[Solebury]

After 14 yrs with ET, was diagnosed with PV. Along with PV came intense itching (pruritis). For about 6-9 months it dominated my life. After numerous drugs and supplements (beta alanine was marginal help) I was prescribed a drug called Remeron (generic name martazapine). Its an SSRI drug used primarily for depression but also has been used successfully to treat pruritis. The relief was apparent in just a few days. Within a few weeks I was able to shower again (no more baby wipes for bathing!!). No more middle of the day/nite attacks of itching. Side effect was that it made me incredibly sleepy for the first 4-5 weeks. After that I gradually began to feel less and less sleepy. Feel pretty good now, seldom need an afternoon nap and I sleep well at nite. For anyone with chronic pruritis it can be a godsend. You jist need to push thru the first month or so of acute tireness—and it stopped my ITCH!

[Tilly_Rose]

I have this after a shower itchy legs and arms some days worse than others I moisturise as soon as possible after and that eases the itch I have ET JAK2 and take Hydroxycarbamide and baby aspirin hope this helps a bit

[Tilly_Rose in reply to Tilly_Rose]

forgot to say I had the itching before diagnosis so must be the ET not medication

[grannieblue]

Hi Carthe, for over a year I was photographing my weird red marks. I would feel the burn/ itch and on looking would find the red marks.They looked almost like nettle rash but not so swollen.Sometimes they would be identical on both sides of my body. They really spooked me and made me feel very anxious.My GP shrugged and my haematologist wasn't interested but when I saw an MPN specialist in Christie's Manchester he reassured me that it was part of the ET. He recommended antihistamines and said to take as many as needed to suppress the marks. I take daily cetirizine which work but I believe you can take a different antihistamine in addition. Hunter on this forum has shared excellent links.Hope you get sorted, it's easy to say keep calm but not easy when your skin is burning.

[BadgerPV]

I had gone a few weeks without much skin irritation after showers. However the last two weeks make me want to scream; it’s like tiny needles being poked into you at once all over the place, and during the day. I’m trying my best not to scratch my skin off after showering. It seems to subside in about 20 minutes. My latest cbc showed hematocrit rose back to 45 and late let’s dropping in to the 580 range. Will see if hematocrit continues to rise or decreases if the itchiness changes. Lotions have no effect for me. The acid trick might be worth trying. Be well.

[Jody00]

Hi Carthe ,itching I get is on my feet legs ,hands arms my stomach can get itchy I did go to the doctors he said can either take antihistamines or cream for the itchy, symptoms I do get now is itchy ,tinnitus in my ears ,dizzy ,suffer from tingling in my feet and hands, which haematologist have made me appointment to see neurologist to see if my tinglings dizzy headaches are a neurologist thing or is it my condition Xx