Stupid itching

[Bearnasty]

Hi there, I was diagnosed with Essential thrombocythemia ('ET') in December 2021, which has been managed with venesections and aspirin,

June last year I had knee surgery, And didn’t have a venesection for 4 months, then began having itchy body went to my GP who prescribed me cream (didn’t really work) wasn’t until my specialist rang to discuss my blood clot (from the surgery) was told it was likely down to not having venesections and it was a common sympton of Myeloproliferative neoplasms ('MPN') (to be honest I’ve been incredibly lucky, and haven’t had many symptoms, do get fatigued but luckily is easy to manage, and had a enlarged spleen a couple of times, actually feel like a fraud sometimes seeing how some people suffer) i had weekly then fortnightly venesections and it went, went to my GP lately for an unrelated matter and had blood test and cameback with low iron but they weren’t sure if I’m allowed iron so had to speak to my specialist who said I’m not, and to hold of on venesections, haven’t had one now since beginning of January and the itching is back,

Wondering is there any way to stop/ease the itching other than cream???

[Duncan]

Hello there @Bearnasty, welcome to the forum from one survivor of Myeloproliferative neoplasms ('MPN') to another. Love your username by the way!

I really feel for you with that itching, but perhaps it might help to know you are certainly not alone with it. From my non-medical understanding, itching really is a common side effect of Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'). How literally irritating, right?

Just wanted to say that I know that sense of feeling like a fraud in comparison to symptoms that others experience, but I would say that itching and an enlarged spleen are symptoms that no one would want. You are certainly not a fraud—speaking of the Polycythaemia vera ('PV') I live with, it’s taken some time for me not to feel survivor’s guilt at ‘getting off lightly’ compared to others, so I hope it eases in time for you.

I’ll share the great Blood Cancer UK information about pruritis AKA itching where you’ll find some science-backed tips. Others around the forum say that they’ve noted more itching when their blood is thicker, which sounds like your experience too. Many people have shared that using cooler water when washing helps reduce the itching after, and using milder and less perfumed shower gels and washing up liquid can help too.

I find stuff made for babies and hypoallergenic products usually have fewer harsh ingredients. Although I’ve been fortunate not to get the dreaded itch, I do have sensitive skin and notice it dries out super fast these days, so my own tip is to keep hydrated, moisturise well, oh and wear rubber gloves when doing the dishes!

If you want to find others who have shared their tips you can use the search box at the top and Related Topics below. I’m sure other forum members will be along to share what helps them.

Sorry you’re dealing with that itching @Bearnasty but I’m glad you found us. I’d be interested to know what you find helps as I bet it’ll assist someone else too. Do please keep us posted about how you get on.

[Bearnasty]

Hi @Duncan thanks for responding, username is my photography alter ego, wasn’t sure wether to use it as could come across kind of aggressive, haha,

Yeah so I found out after my surgery, in all honesty I haven’t really done that much research into Essential thrombocytopenia, have only really looked into things that I’ve had issues with, the itching is definitely irritating,

“You are certainly not a fraud—speaking of the Polycythaemia vera (‘Polycythaemia vera ('PV')’) I live with, it’s taken some time for me not to feel survivor’s guilt at ‘getting off lightly’ compared to others, so I hope it eases in time for you”

this definitely has helped ease it a little bit, I’m not very good with expressing myself and can never think of the words I want to say, but getting off lightly sums it up perfectly,

Thank you I’ll have a good read through that when I get a spare 5 minutes to myself, the first time I had the dreaded itches I did try colder showers, and using fragrance free baby shower gel (luckily had some left over as had to use before my surgery) but they didn’t seem to work for me, I even changed washing detergent for clothes as before knew it was due to my Essential thrombocythemia ('ET') thought I’d trouble shoot a few things,

I had a call today from my specialists nurse as tried to see if could get a sooner appointment than one I have booked, as wanted to discuss the prospect of getting a venesection sooner rather than later, but no joy as my iron is so low it’s outweighs the itches, but she did say to try antihistamines so as soon as I finished work I went and stocked up, hopefully that does the job or at least eases it, also got some epimax cream which first time using hasn’t made much difference,

That’s how I come across this forum after I googled itchy Essential thrombocythemia ('Essential thrombocythemia ('ET')') and saw a post on here, it was late when I signed up (wasn’t actually that late, but I’m up at 5am so 8pm is late late for me ) and didn’t have it in me to get to grips with how the site works so I thought I’d just put a thread out, when I have another 5 spare mins I’ll have a look around the forum and get to grips with it,

I’ll let you know how or if the antihistamines work after I’ve taken them for a bit

[Duncan]

Hey there @Bearnasty, I’m really glad to have helped, even a little! From what you say, you’re doing all the right things to sort out the itching. Well done, I know it’s hard to stay motivated when a symptom is flaring up.

Obviously I’m not a doctor but it does sound like other forum members find ways to manage the itch, sometimes by changing medicine or even starting one, so I trust you’ll find what works for you too. And may I add that you’ve expressed yourself very clearly, and certainly not bearishly! I’ll add the Blood Cancer UK information about Essential thrombocythemia ('ET') here in case you’d like to read more: Essential thrombocythaemia | Blood Cancer UK

Anyway, I know another forum member who also had the dreaded itch as well as low iron, and his specialists were able to give him occasional iron infusions I believe. I’ll tag dear @Rammie18 here in case he can offer further tips, hope that’s okay Rammie.

I’ve heard good things about antihistamines, for what it’s worth, so I hope they help. If you’d like to speak to the lovely specialist nurses at Blood Cancer UK on 0808 2080 888 they’ll be able to suggest medicines that we forum members can’t, perhaps sooner than your next appointment with your own specialist.

And by the way, should you ever wish to share your photography here if it feels appropriate, the forum always benefits from a bit of creativity I reckon. Some of us share photos and other visual media. We even have some amazing poets here who share sometimes!

Do please let us know how you get on @Bearnasty, glad you found the forum!

[Bearnasty]

Hi @Duncan just a quick one tonight, after saying fatigue hasn’t been to bad and manageable, past couple days have been quite bad, and fully zapped me,

But wanted to let you know, since starting antihistamines (one a day since Monday) the dreaded itches have gone, early days but hopefully it continues

[Duncan]

I’m really so glad to read that the itching has gone @Bearnasty, long may that last. So antihistamines came to the rescue, thanks for letting us know. Now it’s time to enjoy your itch-free skin, I’d say!