hi ladicaz
How I sympathise with the symptoms you describe! O.M.G I thought I was alone with this torment, and it is torment. My doctors and nurses don’t quite understand what it is like. Trying to explain the burning, electric shocks like going under the skin… you have to experience it to understand it,
I scream aloud when I get an ‘attack’ I don’t care what the neighbours could think.
The antihistamines don’t touch it,
I have asked and begged my specialist nurse for something to aliviate it. Their reply is always the same “Sorry, there is nothing we can do to help with the itching”.
After reading your message a nd all the replies, I feel there is HOPE and different things to try.
All the best to you and a big THANK YOU
oleconchi
4 Likes
Oh @oleconchi and @ladicaz I think it is so true to say that if someone else has not experienced something they cannot comprehend what it is like.
In a way that is how this forum works so well and you might also find a handy hint that helps.
Please keep posting and be kind to yourselves, oh, and yes, scream if you need to, it must be torment for you.
1 Like
Thank you Erica.
So very helpful just to know that someone understand. I cannot tell you what a relief it is to know that.
We are not alone and other people understand and feel our pain.
Thank you. oleconchi
2 Likes
It’s so helpful to know you are not alone. It must be such a difficult thing to explain! Here’s to hope in 2022! 
1 Like
I have been suffering with itching burning sling for about a year. That is the reason I consulted the doctor in the first place.
Almost a year on, after I was eventually diagnosed with ET and prescribed Hydroxycarbamide. I have had venesections, a bone marrow biopsy but no progress to Myelofibrosis was found. Last time I asked my consultant if my diagnosis was ET or VE, she couldn’t t give me an answer. But I am still suffering with the most awful itching skin …it is more than an itch, it is a torment, burning feeling that can go on all day and , at times, makes me feel suicidal. No thing but nothing can sooth it. I have tried cold water, different creams and lotions. In desperation I have booked to see a hypnotherapy.
My hospital has, I feel, abandoned me. When I try to ring my allocated nurse, she is never available. I have run out of medication and although I asked the hospital to send me some more, they haven’t done so. I rang again this morning but I had to leave a message as there was none available to talk to me.
1 Like
I am sorry to say that no, I have not found anything to help with itchy burning skin.
In desperation, I have booked to go an consult a hypnotherapist. I have tried all sorts of possible remedies, col water, different creams and lotions.
My consultant has agreed to refer me to a dermatologist but I don’t know how long I will have to wait for an appointment.
At the moment, my quality of life is very very poor. I get an ‘attack’ regularly and it goes on for the whole day.
If anybody can suggest anything to help, please please get in touch. I would be most grateful.
oleconchi
1 Like
Oh @oleconchi I am so very sorry to hear what you’re experiencing, it sounds so debilitating and uncomfortable. It’s good to hear you’re being referred to a dermatologist - I really hope you don’t have to wait long to see them. You may have tried it all already but MPN Voice have some tips for coping with itchy skin- Itchy skin – MPN Voice
May I ask if you have told your GP or consultant, or anyone else in your healthcare team, that the extent of this itching and burning feeling makes you feel suicidal at times? If not we would really encourage you to do so as it’s so important that you get support around this. It sounds so tough.
You mention that you’ve run out of medication - have you managed to speak to someone at the hospital now? I’d really encourage you to be persistent in contacting them as it’s important they’re aware of this.
I’ll send you a message privately on here too with some further info, but also please don’t hesitate to give us a call on the support line if you want to talk things through.
2 Likes
Hi @oleconchi I cannot imagine what you are going through and I hope @Alice_BloodCancerUK advice will assist you.
Yes, I have learnt that I often have to be so persistent, can the hospitals PALS (Patient Advice and Liaison Service) assist?
Can your GP or Pharmacist help with your itching it must be so nasty if it makes you feel so bad.
If it gets really bad at night or when you cannot contact others don’t forget phoning the NHS 111 or even the Samaritans on 116 123. I find just talking about something just diffuses what I am going through sometimes.
Please keep posting how you are, and be kind to yourself
1 Like
thank you so very much all of you who reply to my message about itchy skin.
I am now on my way to see a hypnotherapist.
I will let you know how I got on.
kind regards,
oleconchi
4 Likes
Please let us know how the hypnotherapy session goes 
1 Like
Hi @oleconchi how are you feeling now and how did your hypnotherapy go?
Look after yourself.
1 Like
Yes - I was really curious as to how the hypnotherapy went?
1 Like
sorry I didnt reply sooner.
The very kind hypnotherapist lady did’t really help me I am sorry to say.
After 2 sessions I stopped going to see her.
My itching and burning skin continues. After about a year from my diagnosis, I still get ‘atacs’ lasting hours, sometimes all day. Blood cancer org.uk are wonderful. I cannot praise them enough. Not only do they listen and support, but they also contacted my GP on my belhalf. I was very grateful because it is practicly impossible to get to talk to my GP.
Best wishes and THANK YOU!
1 Like
@oleconchi I am glad that the Blood Cancer UK support line have been supportive to you, I will copy this to them @BloodCancerUK
I am so sorry that your itchy and burning skin continues.
Look after yourself
I’m sorry it did t help at all. It must be so frustrating.
1 Like
I am sorry I haven’ t been in touch for sometime.
I am now writing to ask if anybody with Policythaemia Vera (Polycythaemia vera (PV)) has tried Phototherapy .
After a whole year of suffering with terrible itching/burning of my skin, mostly arms and legs and having tried lots of different antihestamines , I have been offered Phototherapy.
I know it comes with quite a lot of risks, including skin cancer.
I am thinking about what to do. It seems to be the only hope available to stop my itching. At times I just want to give up as it can go on for hours on end and it is affecting my quality of life.
I would be so very grateful if someone who has gone through with this treatment, would tell me a little about how does it feel and most of all, does it work at stopping the itching?
Many thanks. oleconchi
3 Likes
Hi @oleconchi. It’s good to hear from you. I’m really glad they have offered you a different kind of treatment. However, I understand how you have to weigh up the pros and cons. I hope somebody might be able to share their experiences with you. Is this treatment really successful for treating your symptoms. I’ve not heard of it before?
1 Like
Hi @oleconchi, thank you for sharing and for updating us here. I’m so sorry to hear that this continues to be an issue for you, I can appreciate that it must be so tough. It’s good to hear that you’ve been able to get attention for this and are being offered treatment. May I ask whether you’ve shared your concerns with your treatment team around this? I think this would be helpful for you if you haven’t already- they’ll be best equipped to talk you through the potential benefits and risks of the treatment, in context of your individual circumstances. They should also be able to give you more information around effectiveness of phototherapy as a treatment, and why they’re offering this to you. It can be difficult to make decisions around treatment and it’s so important for your team to support you with this.
Please remember our Support Team are here for you- please don’t hesitate to get in touch if you’d like to talk anything over at all (Blood Cancer UK - Support for you).
Best wishes,
Tanya.
2 Likes
Hi @oleconchi you really have been suffering haven’t you if you have been feeling that you just want to give up.
I have never heard of Phototherapy.
As @TanyaBloodCancerUK says perhaps talk to your treatment team to find out what is involved and the benefits and risks for you as a very special unique person with your own medical and family history. You could ask them about your fears, questions etc
Then I would be getting the pro and cons list and only make a decision when it feels right for you.
You can always chat it through with the Blood Cancer UK support line or write on our forum which sometimes helps me too.
I hope others might be able to help you.
Be very kind to yourself and please let us know how you get on.
1 Like
Hi @oleconchi I have been thinking about you, how are you doing now?
Look after yourself
1 Like