I endure like many others , severe deep itch associated with a bllod disorder( Myeloproliferative Neoplasm (Myeloproliferative neoplasms (MPN))
JAK2 Variant
(Policythemia))
Hydroxycarbamide controls platelet and haemaglobin levels but itch persists.
Following heart surgery the itch all but disappeared only to return after 6 months when I stopped taking the temporarily prescribed post - op drug CLOPIDOGREL taken along with asprin.
Doctors allowed me to try clopidogrel instad but not with aspirin but unfortunately if anything the itch got worse.
I am now back on aspirin alone living with the itch.
My conclusion is tha the combination of both drugs may be effective on the itch but deadly with increased risk of stomach bleeds.
GPs and specialists have no alternative suggestions.
Welcome to the Forum. I’m pleased you have found us and posted.
I’m sorry to read about your itching and the struggles you are having in trying to manage/control this.
I’m sure there are others that will comment on their own experiences of what helped, or didn’t help quite as well.
We do realise that Itching is a troublesome symptom of both the Polycythaemia vera (PV) and/or the Hydroxycarbamide treatment, so we do have a full webpage specifically about this: itching/side-effect/symptoms which you may if useful to have a look at.
Do speak to your Haematologist about other options for managing your itching, you could ask about possibly switching to a different treatment for your Polycythaemia vera (PV), as there are others that are known to help with itching, specifically Ruxolitinib (aka Jakavi). It can depend on where you live and other eligibility criteria though.
Other options, including UV light therapy, are listed on the webpage.
May I ask, did your Haematologist discuss another medication to protect your stomach whilst on Aspirin or Clopidogrel, for example Omeprazole or Lansoprazole (PPI = proton-pump inhibitor)? You should also make sure your aspirin are “enteric coated” if you aren’t on a PPI, these are more gentle on your stomach lining and less risky.
If you’d like to talk any of this through, please do call our support line: 0808 2080 888 we’d be happy to speak with you.
Do let us know how you’re getting on.
Take care, Heidi.
Hello @JIMMY, welcome to the forum. Sounds like you have Polycythaemia vera (PV) like me, and I’m sorry to read of how irritating that itching has been for you. I also have the JAK2 gene mutation and take aspirin and hydroxyurea.
In fact, I’ve taken daily aspirin for many years and haven’t noticed any issues, in case that’s a concern for you. I’m not a doctor but I gather that taking low-dose enteric-coated aspirin pills affect our stomachs less, like dear @Heidi_BloodCancerUK explains.
As for the itchiness you experience, I see on your other post that you already know about cooling the temperature of shower water. Have you tried using emollient shower gels, ones that are less soapy and include moisturising ingredients? That’s helped my skin be less dry and less irritable.
Another thing I use for reducing inflammation which may help with skin itchiness is CBD. It’s a non-psychoactive part of hemp and cannabis plants, but can’t make you high. I mostly use it as a tincture, but also in lotions for applying to aches and bruises. Just an idea.
Do please let us know what you find helps your skin @JIMMY.
Many thanks to Duncan and Heidi for your interest and comments.
Duncan, it does sound like we have very similar conditions.
It is good to know that long term use of aspirin has not presented major problems for you and so far , I am the same although I have only being taking it for 2 years since my heart bypass and my Polycythaemia vera (PV) predates that by several years
For 6 months post-op , I was put on clopidogrel AND aspirin to reduce the risk of blood clots and my itch all but disappeared
Unfortunately, continued use of both drugs simultaneously increases stomach bleeds unacceptably.
So clopidogrel went and itch came back.
Heidi
Interesting comments, particularly w.r.t CBD
Like many who suffer similarly , I feel the word “itch” is perhaps misleading and some have described the sensation as coming from the bones.
I t is also unpredictable and in my case, can affect chest , upper chest , stomach, or/and arms in one “attack” or separately .
Consequently, local application of emollients is impractical and indeed, I found it could initiate a localised attack.
I do use moisturiser in my bath as my skin is dry, but the “itch” persists , sometimes even IN the bath
I am intrigued by the suggestion of CBD, but I do not appear to have skin inflammation (just arthritic joint ) .
I might give CBD tincture a try if GP confirms it won’t conflict with my daily morning drug cocktail.
Thank you so much both of you for taking the time and trouble to help.
Good to talk
Oh you’re most welcome @JIMMY, I really feel for you living with that itching. Your description of it feeling like it comes from the bones makes it sound even worse, I really am sorry you go through that.
Sounds like you have already tried all the tricks I would have, and all I can say is I hope something changes for you. My experiences of taking CBD is that it helps inflammation inside and out, depending on which form of it I use, but science is lacking as I believe it’s still considered a drug in the UK. I read about it years ago being helpful for people with autism who often have skin and other sensitivities related to inflammation, but what research I’ve read isn’t conclusive either way. But still, it’s a natural potential source of relief. Do check it with your doctors.
Have a look around the forum @JIMMY using the search bar at the top as you might find some other tips for what helps others with itchiness.
Ruxolitinib Jakavi is the only thing that worked for me. My itchings were horrendous. RUXOLITINIB cured them after the first tablet.
Best wishes. You are right it is like the bones are itching. No cream or antihaestamin stopped it.
Great to hear from you again and I really remember what you went through with your itching.
Please do let us know how you have been doing.
Really look after yourself
Hello @oleconchi
So good to hear from you. Thank you for posting and adding your experiences, it’s really helpful. How are you doing? Is the medication still working well for you?
Wishing you and your family a calm and relaxing Christmas. Take care.