That’s amazing bit of info Heidi, thanks for that. Definitely noted as you never know til you know 
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Hello @Heidi_BloodCancerUK. I am wondering if taking aspirin every day has any bearing on the itching, as I suffer it too. Another question I would like your professional opinion on is, I have done some research into aspirin doses, and it seems that it’s benefit remains up to 80 per cent effective after 72 hours, so is there a reason why it is prescribed daily, could it not be taken every other day to be just as effective? Thanks for all your input. I will be interested to hear your views on this subject.
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Hello @Chris1
Thank you for posting your question, often others have the same questions, but feel they can’t ask, it’s good for someone to open it up. Hopefully I can add some thoughts or knowledge for interest or further discussion.
With regards to Aspirin being the possible cause of pruritis, I will have to do some more reading and digging! Can I ask a couple of things, and feel free to private message me with the answers, so I can try to find better studies; How old are you, what dose of Aspirin do you take, how long have you been on Aspirin? Are you also on Hydroxycarbomide or do you manage your Polycythaemia vera (PV) with venesections?
If I am honest, I hadn’t realised that itching (puritis) was so heavily researched in Polycythaemia vera (PV) and part of the symptoms profile. I did know that itching can be a B-symptom for some people with Lymphoma, but none of my Polycythaemia vera (PV) patients in clinic, ever really complained of puritis to me before. I thought puritis was related to the Hydroxycarbomide, as this had been mentioned to me.
Reading through the Forum recently and doing some research on for drugs for Polycythaemia vera (PV), I have been saddened to read about the severity of pruritis for some Forum members, as well as it being listed in the research articles.
I have found this article extremely enlightening, for new knowledge on the causes of pruritis in Polycythaemia vera (PV) (spoiler alert - it’s due to a specific gene mutation, causing cytokine hypersensitivity) and also knowing that Ruxolitinib does help with pruritis (although this study/article was based on only one patient) as it decreases the cytokines and inhibits certain growth factor pathways, that are related Polycythaemia vera (PV).
Ruxolitinib__a_JAK2_inhibitor__as_an_emerging.66 (2).pdf (140.9 KB)
Keeping a tracker of MPN / Polycythaemia vera (PV) symptoms is very helpful for healthcare teams and also patients themselves. Often it is hard to remember quite how you felt last week, let alone a month or two ago. I would encourage anyone to print off and fill in this symptom tracker assessment tool in between their hospital or Doctor appointments. It is useful to know if symptoms are improving, getting worse or are stable. MPN Symptoms Assessment Form | VoicesOfMPN.com
Do you currently do this, has it helped at all - I would be very interested to know if anyone else has used one or been offered one by their Haem team.
Best wishes,
Heidi.
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Hello Heidi
Thank you so much for your reply and all the information
My specialist Hematologic mentioned to me the last time I saw her face to face, over a year ago, that she would try to get me the medication that would help me , ruxonitinib, on compassionate grounds.
I don’t know what the answer was, obviously, to try other medication and treatments… including phototherapy other antihistamines, creams etc.
My symptoms are definitely getting worse, I get them everyday, more intense and go on for hours.
Hydroxycarbamide that I take 5 days a week, maybe helping with the blood counts, I don’t know, but it most certainly has made no difference to the itching and burning of the skin.
I will take the information that you gave in your message, to my next appointment with the dermatologist next Tuesday.
Thank you again for your support. Oleconchi x
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Interesting post…thanks.
In laymans terms when my Platelet count was very high the itching was at its worsr for me…i have ET
Now they are at okayish levels…and i am on Hydroxycarbamide the itching has almost gone.
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I concur
Whenever I get itchy, tired a lot more and start craving fennel seeds I sense my iron levels are low and my platelets are on a high… just need a blood test to confirm it
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Hi
I take Hydroxycarbamide and aspirin and warfarin. I have done so for about eighteen months. In the last couple of months I have experienced severe itching on my forearms. Showering definitely makes it worse. I absentmindedly scratched my left arm through two layers of clothing and a scattering of small bruises has appeared. Rather unsightly. It gather this is due to the warfarin I take. I keep applying doublebase cream as I find this helps me. Do tell your GP and consultant that the itching is making you feel low and unhappy and ask for help. It is very difficult to ask for help when you are feeling down, and probably very tired, I do understand as I have been there and sometimes I still get low particularly when tired, I do find it difficult to cope. I find a short walk in the fresh air helps even if it is Just around the houses of the estate I live in. Ask them to review your medication, you never know, it is good to check. Hope things soon improve for you.
Marylin
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Hello, it is me again.
Forgive me but writing to you is the only way
of reliving my state of mind. In the middle of yet another attack. I get them every day, there is no let-up no relief, no time to recover in between flare ups. My whole body is burning, the itch under my skin arms and legs, feet burning face…it is absolutely horrendous. I wish I could go to sleep and never wake up again.
Following the advice of the nurse specialist from the Blood support Group, I have arranged to have my iron levels checked. Next Friday I have a blood test. Although I think that I had them checked before at Guys hospital in London.
To be frank, I do not understand and I cannot believe that there is nothing that haematology specialist can do to help me and alleviate this awful symptom.
Sorry. I know I am repeating myself. It is the same old thing. I am desperate. Pleaaes please someone help me.
Thank you for your kindness and support.
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Oh @oleconchi I so, so wish that I could help you, I feel I speak for others when I say that we feel so powerless to help.
I really realise the severity of your symptoms, but I just wonder if diversion tactics help at all like Michael being there, cooking, dare I say the World Cup even. Some people find meditations help and the Blood Cancer UK website have some.
Please repeat yourself as much as you need to, we all care about you so much.
Be ever so kind to yourself and please keep posting, I also look forward to hearing more about you.
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Thank you so much Erica.
Another day and the “monster” has come back with vengeance.
I have just tried to contact my haematology nurse and left a message. Also my husband who is very distressed seeing me like this and feels helpless not knowing what to do , has tried to contact my consultant in Brighton hospital to no avail. He left a desperate message.
I honestly don’t know what I would do without your support and thank you all so much for being there for me.
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@oleconchi it sounds like you have the most incredibly supportive family. We’re here on the support line if your husband might ever find it helpful to talk things through with us. He can call us free on 0808 2080 888. Good to hear you’ve got a blood test coming up. I’m so sorry that it’s a difficult day today, I have everything crossed it settles for you. We’re here at the end of the phone if you want to talk things through.
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Have you been in touch with Macmillan?
They are good for support and can sometimes arrange other avenues of treatment
If not for you then your hubby should call the National number for help and support
Please give it a go.
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Hi
So sorry that you are suffering so much with itching/burning, I do get it after showering but it goes if I moisturise with doublebase cream. I think the drugs dry the skin out and sometimes I have to moisturise two or three times a day. I do hope you can find something to help yours, it must be awful if you have it continuously. Polycythaemia vera (PV) is not a very well known cancer but it does make us suffer horribly sometimes and it is hard to find ways to cope. I seem to get rid of one thing and then my body seems to find another thing to torture me with. I do think of you and your suffering when my skin burns. You will cope with it somehow. Thinking of you, Marylin
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Thank you for your continuing support.
Today I had a blood test to find out if my levels of iron and vitamin B12 are normal. I was told that very low iron levels can sometimes cause itching.
I have not had a call back from my nurse specialist nor from my consultant. They are probably waiting for the results of the blood test.
I hope there is something someone can do to help me. I honestly don’t know how much longer I can continue to live with this torment.
You help a lot. Just to know that you are there and that you understand and know how I feel is a great comfort. Thank you.
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Hi @oleconchi ,
I have been reading your posts and have the upmost sympathy for what you are going through.
Like a few others on here my father’s first symptom was the itching. He has now been diagnosed with a very rare Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome which came as a huge shock to him. I had googled his symptoms and initial blood test results, so I had some idea that it was going to be some form of blood cancer.
He has always been a very physically and mentally strong person but the itiching has been so debilitating for him. He is not the person he was.
He has been prescribed many creams and antihistamines which seem to work for a few days and give him hope and then he is right back at square one again.
I am just wondering how you are doing at the moment and if you got any answers after your blood test?
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Hello SueM
Thank you for your post. I have only just seen it.
How I sympathise with your father! I cannot tell you. I have Polycythaemia Vera and Jack2 positive.
After almost 2 years of suffering the most horrific itching/burning skin, practically every day. Having tried different antihistamines, creams and 11 sessions of phototherapy, I was getting really desperate. I have also been precribed antidepressents , all to no avail.
Finally, yesterday I had a phone call from my haematology nurse to give me the good news that
(who ever the authority is) has approved the use of “Ruxolitinib” to treat me. This is the medication that my specialist told me would help me with my symptoms, but that she was not allowed to prescribe for me, until or if my Polycythaemia vera (PV) progress to Myelofibrosis.
So, I am full of hope. Scared to get too excited, still getting the itching, specially when in contact with water. I am seeing my Specialist doctor on Thursday. I need to have another venesection and after that, hopefully, start my new treatment.
I am sending you all my very best wishes. I will keep in touch with all of you, wonderful, supportive friends. Sending love xx
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Oh @oleconchi I am overjoyed that you have some hope at last, you really deserve it.
Please do keep in touch with us all, you are a valued part of our forum family.
Look after and be kind to yourself.
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Great news…hopefully the beginning of better times for yourself 
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Hello @oleconchi
Thank you so much for keeping us updated, we have been thinking about you!
What fantastic news - you can finally have the treatment! I bet you are so pleased and relieved (do allow yourself to be excited!).
Once you start the Ruxolitinib (are you having cream or tablets?) would you mind letting us know how you are getting on with it? Hope all goes well with your appointment tomorrow.
Best wishes, Heidi.
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Thank you all for your support and encouragement.
You know, when you wait for something to happen for a long time… and then when it finally happens… you suddenly have mixed feeling…?? you are anxious, you worry that taking something different could come with other side effects or problems… I am trying to remain positive, even excited, but at the back of my mind, there is fear of something new…
I have also book a trip to Mallorca to spend 3 weeks with my sister. I am now worried that they may not allow me to travel because of the new medication…I am in such a panick. Sorry to go on and on…I feel selfish. I will keep you informed. You are so lovely. Sending love. xx
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