Burning itching PV

Hi there i am so sorry…i know sorry will not help you.

I had the itching mainly on my legs for many months before diagnosed…it sent me crazy so all i can do is say sorry…its awful

I strongly believe that there is a way of treating this through medication and its just a way of finding the right medication

I can tell you are in a very…very low place and please let the advisors on here try and help.

Everyone on here sends there love to you and hope and know you will beat this

Lee.

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Hi @oleconchi. Have you tried a cold water bath, or calamine lotion? You sound so desperate, and I really feel for you. These options might help ease the symptoms. A low immune system can cause other skin problems, so has your Dr looked into that possibility?

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Oh @oleconchi I just do not know what to say.
I read somewhere that acupuncture helped, depending on what you might feel about needles.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they have any ideas at all.
Are your horrible symptoms any worse in the hot weather or the cold weather?
Don’t forget the Blood Cancer UK support services are there for you if you want to talk to someone.
Be kind to yourself and please keep posting

Thank you.
I do agree with you. There must be something …but I have been waiting for so long…when I speak to my allocated nurse and I describe my symptoms and I tell her that they are getting worse…I don’t get any suggestions any hope …I have had it all day, now it is 1045pm and I am still itching I dont think I am going to get any sleep tonight.

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Hi Chris1
I have tried cold water showers (horrible!) it acts like an anaesthetic, but afterwards it gets even worse.
Thank you for your suggestion and for replying to my message.
It helps to know that other people are there giving me support.
I think that I am going mad, losing my mad, honestly, I do.

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Hi Leefer,
Thank you for replying to my message.
It DOES help just to know that there are other people out there who understand and support me.
It has been a horrible day with the burning and stinging, and after many hours is still there, although not so severe.

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Can i ask your blood problem?..i am fairly new to the Forum

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Hi @oleconchi. I meant to say it needs to be in a cold bath, not a cold shower. Added salt will give some relief too. A cold shower will add to the stimulation of the nerve endings, and make matters worse.

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Hi @oleconchi

I’m so sorry to read you’re really struggling and at your tether. I have Polycythaemia vera (PV) and though I’ve managed to conquer the main itching fits I can totally empathise of contemplating anything when nothing is working to change how you feel or you feel where you can’t see the light at the end of the tunnel.

Can I ask if your iron is checked as when I’m at my itchiest is when my iron levels are stupid lows. I know iron and blood cancer are like disease and cure but expressed need to get iron and ignored the risk and said I need iron to null my itching, fatigue and mood to my Haemotologist who eventually agreed

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Agree…when i had severe Anemia it was at its worse for me.

Its completely gone now because my iron has stabalized

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I was diagnosed with Polycythaemia vera (PV) about 18 months ago. I only went to my GP because I had very itchy skin and nothing to see on the surface. A blood test confirmed my condition. It was a terrible shock.

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Yep…i knew i was ill and so though suprised at what it was not shocked

A silly question…but do you take Aspirin?

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Yes, I take aspirin daily, 75mg. I also take hydroxycarbamide 5 days a week. Have blood tests about every three months. If the blood levels are not good, I have a venesection, sometimes two one after another.

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Get your ferratin and iron levels checked if you haven’t already. A gp can easily arrange this.

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Hello, I’m Oleconchi’s son and first of all I really want to thank everyone for their amazing words of support for my Mum. She has been really struggling for a long time now and I can see that you have all been an incredible support for her and I really genuinely appreciate it from the bottom of my heart.
The reason for my message is to see how it’s possible for my mum to be prescribed “Ruxolitinib”. I’m not a medical expert but I’m informed that this can ease the burning sensation of the skin. I understand that it’s not prescribed in England on the NHS (although it is in Scotland). Can anyone tell me the process of escalating this issue so that my Mum can get hold of this medication. An email address, contact telephone number, a physical address I can write to? Surely after nearly two years of agony the NHS can prescribe something like this as an exception?
Thanks again for all your kind support.

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One thing you can do is ask your Haemotologist or clinical nurse to get you in contact with an mpn specialist or a second opinion. Or maybe more knowledge about any trials she may meet the criteria for?!

Warning you may have to start at the beginning as in my experience they don’t have access to your records but you can access these and pass them to them.

I think I speak from all of us here that she’s been in all our thoughts and hope the support she finds here gives her some comfort that she isn’t alone and we are all here for her.

Having the condition myself by in its relative infancy I know how tough managing the symptoms is, this on top of the chaos of all other things life brings.

I’ve not tried myself to gain access to medicine beyond that of the NHS but hope someone (and I’m sure they will) give you more insight.

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Hello @Michaelwigley55 and welcome to this forum. I feel for your mother so much and I can tell how much you want to help her. It must be so hard watching her suffer. I live in the London area and have been prescribed Ruxolitinib for a different but related blood cancer. I have myelofibrosis and get the drug prescribed on the NHS by my haematologist. It is given to me under a special licence so it is prescribed in some situations. As others have said I suggest you ask if there is an MPN specialist in your area or possibly enquire about any trials taking place as sometimes that is an alternative way of receiving a particular drug. I wish you and your mother well. Warm wishes. Willow X

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Hi @Michaelwigley55 I am so glad you have posted on here, a very warm welcome, you are obviously such a caring son.
As the others have said your mum has definitely been in our thoughts and I just feel, as we all and you obviously do, so powerless to help her.
This is a question for your mum’s medical blood cancer team who know her whole medical history and if you/they feel they are not experts in her particular blood cancer variant then it is reasonable for her to ask for a referral or opinion from an expert.
Anything is worth a try.
Please keep posting and look after yourself as you obviously do your mum.

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What can I say to all of you? Michael, the most loving son anyone can have. Thank you. I love you so much.
To all of you, thank you from the bottom of my heart. I need your support and I know is there and it helps me just to know that.
Michael is a long way away in Seoul South Korea, but we are constantly in touch.
I have a face to face appointment with a dermatologist next week.
I will keep you informed of the results after this meeting.
Take care and thank you again.
Oleconchi x

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Hello @Michaelwigley55
Thank you so much for joining the Forum and showing support for your Mum too!
It’s lovely to read your post and very reassuring knowing she has you to talk to.
I wanted to reply to you yesterday but wanted the correct information for my post.
I discussed the use of Ruxolitinib in Polycythaemia vera (PV) with our clinical trials team, as you said, at the moment it is only prescribed for Polycythaemia vera (PV) in Scotland, not in England. However, NICE are reviewing this in May 2023 (not that this helps your Mum at the moment) but for others it may be good to know, that this may become a possible option next year:
NICEruxolitinibPV

Something more positive to tell you though, some medications can be prescribed on ‘compassionate grounds’. This can often be a complex process, and not all Doctors do this, but as this drug it is already in use for Polycythaemia vera (PV), it may be less complex to get hold of than a drug that was used for a completely different disease or used abroad.
I will send you a direct message, so I don’t clog up this thread, with some links to research articles and explanations of ‘Compassionate Grounds’ as well as information on clinical trials.

Ruxolitinib is also available as a cream, and is used for Atopic Dermatitis, I am not sure if it is available in the UK; I only found this out yesterday, so this may be worth your Mum discussing with the Dermatology team next week. This would need to be very considered carefully if she is still taking HU under the Haematology team, I am not sure if it would help the skin and the blood (Polycythaemia vera (PV)).
RUXcream
Reading this article highlighted an assessment tool that may also be useful to take along to the appointment, called the DQoL (Dermatolgy Quality of Life) assessment. It is used in many dermatology areas and a good way to know if the itching is improving or getting worse. Halfway down the page on this link you can open a zip file: DQoLinfo Most areas of healthcare have assessment tools similar to this one for different diseases or symptoms, they are useful to both patient and healthcare professional.

Hopefully some of this information is a good starting point for you and your Mum to accessing treatment that will help her symptoms. If I found out any other useful links I will let you know.
Warmest wishes to you both.
Heidi.

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