Itching

Hi John itching is a common and maddening symptom of pv. It is caused because we produce too many histamines in our body. There are many remedies, some work for some, some for others. First try taking Benadryl and apply an anti-itch cream to the areas. If you are in the US, a lot of people use both Zyrtec and Zantec together. They call it the 2 Zs. The Zantac is for your stomach but seems to take care of the overload of histamines in your stomach which contribute to the itch. It can go away if you get on meds. I'm on Jakafi and the itch is gone. Hope this helps. Zap

Hi John, it ses also my mots concrete primary symptom. For me, it was  the  feet, it kept me awake at night. Before the diagnosis, Advil was working for me. But, in my case, it stopped after a couple of venesections.  Now on Jakavi, no more symptoms. I could easily forget I have it. Talk to your Dr about it.

Marie

Hello John ,

Sadly, itching is a well-known feature of Polycythemia.  It doesn't affect all people but those that do have this itching find it a problem to contain.   Anti-histamine treatments can be effective but I would suggest you have a word with your doctor who can probably prescribe a suitable treatment, either by cream or medicine.  It should gradually lessen over time but some people suffer this complaint for a long time.  It just depends on your body chemistry.  You are far from alone.   Good luck.

Peter.

Hello John, Yes I know the itching heebie jeebies.

I’m not taking any drugs other than aspirin and I go for venesections every nowand then.

I have found that all the symptoms of PV are temporary. The itches were in the mornings for maybe a week and then they’d stop for a while. Maybe a week or a month. All very hit and miss.

I cannot for the life of me remember exactly where I read about histamine and mast cells ( I go from one website to another like a bee to flowers) but I read somewhere not too long ago about the link between mast cells (makers or releasers of histamine), calcium and fluoride.

OK, this is going to sound really cranky and it quite possibly is, but I realised that I only itched in the mornings when my routine was wake up, cup of tea with milk (calcium), shower, brush teeth (fluoride), more tea with milk (calcium), breakfast, brush teeth (more fluoride). 

And I wondered what would happen if I got rid of the fluoride in the equation. So I bought some non fluoride toothpaste. And I can say that the frequency and duration of the itching has lessened considerably. Now I itch maybe one morning per month and mot the rip your skin off kind of an itch either.

Try it. Nothing to lose but your reputation of being of sound mind and body.😊

Hi John, I've had polycythemia ruba vera since 17, now 21 and the itching has stopped for me at most times. I feel that I mostly feel itchy when I'm due for a ven section or my blood count isn't right. 

hooefully over your next ven sections the itching will die down. Best of luck

 

Hi John

. I have had pv for about 5 years and I too have a bad itching problem. I also need to walk or distract myself until it wears off. It is mainly upper arms, thighs and torso that are worse. I find cold water isn't so bad but I gave up with hot showers a long time ago. It's easy to learn to wash a different part of your body each day and escape the itch.

I have tried all sorts of antihistamine tablets and nothing works. However I can cope with the swimming pool when the grandchildren visit so the rest is easy to live with.

Kind regards David

Hi John are you on any meds? If you're not, try laying in the sun. Before I was on meds, I found laying in the sun stopped my itching completely for the whole summer. Ive read others say this also. I know one man goes to tanning salon in the winter. Not for very long, but he says he's stopped itching also. Im not a scientist so I don't know why, but I know it worked for me. Now I'm on Jakafi which also stops the itch, but I've got to be careful with the sun. Same if you're in HU. The sun will not be your friend.  Zap

Hi John,

            I`m relatively new to PV, being diagnosed about a year ago.I have experienced itching during this time but it seems to come and go.I have been looking at foods etc. which apparently contain Histamines(Alcohol,Chocolate,Pulses etc.).I suppose it is possible that if we already have itching from PV then certain foods containing Histamines could either precipitate or worsen the condition.

There are also foodstuffs which apparently are Anti-Histamines like Turmeric,and a substance contained in Onions and Apples.I tried 1/2 teaspoon of Turmeric recently as a tea and it seemed to dampen down the itch but too soon to know if it will be any good in the long term,and of course certain natural Anti-Histamines might not work for everyone.

As far as having a shower is concerned and even with luke warm water it always produced a frustrating and annoying itch.I recently discovered that instead of rubbing myself dry with the towel it was better to pat myself dry and hey presto,no itch.Apparently by rubbing yourself dry with the towel the nerve endings on the skin are stimulated causing the itch.

Colin. 

Hi John. I've had PV for about 20 years. At times the itching I experienced was unbearable! I've been told by my doctor that itching is a sign that the PV is active. After 7 years of receiving phlebotomies only and itching constantly, I went on a drug called Hydroxyurea, which I remained on for about 10 years. During those years my itching was minor and often not at all. About 2 years ago I switched from Hydroxyurea to pegalated Interferon. I rarely itch ever now. Both drugs have their side effects and risks. They also both surpress the over active bone marrow and therefore the disease, which can eliminate the itching or greatly reduced it.