PV Itching Not After Bathing

Posted by trillium @trillium, Mar 16, 2021

There’s so much information out there about PV itching following contact with water. My question is simple—can the PV-related itching happen at other times of the day? I consistently start itching at 7 pm every night. Interestingly, the itching last night started at 8 pm I presume because of daylight saving time change. Does anyone else experience this? Should I look elsewhere for the cause of the itching? I’d be interested to hear anyone’s stories about when they itch, not just what to do about it.

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I itch on my left arm all the time it drives me crazy NO creams etc work

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @eileen11108, Just a quick note while you wait for @victoria01 to answer…When using Tea tree oil it shouldn’t be applied directly to skin as is. It’s important to dilute the oil with a carrier oil, such as olive oil, coconut oil, or almond oil.

The method I learned is that for every 1 to 2 drops of tea tree oil, add 12 drops of a carrier oil. Test it first on a small area of skin just to make sure you don’t have a reaction.
My two cents worth. 😉

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Lori,  I greatly appreciate all your replies and your dedication.    
Eileen

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Profile picture for eileen11108 @eileen11108

Do you apply the tea tree oil directly to your skin?

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Hi @eileen11108, Just a quick note while you wait for @victoria01 to answer…When using Tea tree oil it shouldn’t be applied directly to skin as is. It’s important to dilute the oil with a carrier oil, such as olive oil, coconut oil, or almond oil.

The method I learned is that for every 1 to 2 drops of tea tree oil, add 12 drops of a carrier oil. Test it first on a small area of skin just to make sure you don’t have a reaction.
My two cents worth. 😉

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Profile picture for frances007 @frances007

I too experience chronic itching, primarily on my back and in the evening. I understand that in my case this is related to the bile duct dilation. I question the use of full strength tea tree oil, but also know that the warning on the bottle I have says not to use full strength on one's face. I was prescribed a medication for my itching that came in powder form, but my pharmacist told me she did not think I would like it because it takes a long time to start working, and it also causes constipation, so I never tried it. Instead I use the prescribed cortisone ointment on occasion.
I scratch so much that I bleed often. However, the attacks are rather short and then I have to will myself not to scratch. It can be just awful. I may look into the tea tree oil, but perhaps dilute it and make a spray so I can spray my back.

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I never put the tea tree oil on my face. I hope this information helps you.

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I too experience chronic itching, primarily on my back and in the evening. I understand that in my case this is related to the bile duct dilation. I question the use of full strength tea tree oil, but also know that the warning on the bottle I have says not to use full strength on one's face. I was prescribed a medication for my itching that came in powder form, but my pharmacist told me she did not think I would like it because it takes a long time to start working, and it also causes constipation, so I never tried it. Instead I use the prescribed cortisone ointment on occasion.
I scratch so much that I bleed often. However, the attacks are rather short and then I have to will myself not to scratch. It can be just awful. I may look into the tea tree oil, but perhaps dilute it and make a spray so I can spray my back.

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I use two q tips that I saturate with the oil and apply. I dip the q tips into the bottle of tea tree oil then apply to itchy areas. My legs are especially itchy for me. I hope this helps you

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Profile picture for victoria01 @victoria01

I found wonderful relief using full strength tea tree oil. I’ve had polycythemia vera for 20 years and this works best for me. I hope it works for you too.

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Do you apply the tea tree oil directly to your skin?

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I found wonderful relief using full strength tea tree oil. I’ve had polycythemia vera for 20 years and this works best for me. I hope it works for you too.

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Profile picture for jerrlin @jerrlin

I have polycythemia Vera and was diagnosed in May of 2023. I had the itching 3 years before my blood counts showed a problem, therefore they didn’t test me but kept sending me to dermatologist which diagnosed it as puritis. I now find antihistamines help the most.

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What is polycythemia Vera and what are the other symptoms? Mine is more of a tickling was yours a bad itch? Some people in this thread said the scratched until they bleed!

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Profile picture for saucy @saucy

I have constant tickling all over face, ears and back. Also bad itching on scalp and dermatologists had me use Vani cream shampoo and conditioner. Also Fluocinonide solution, neither has helped. I don't know what PV is but all blood work comes back normal. This has been going on for several years and often feels like little nats crawling on me. I only have to scratch for a second but it will pop up somewhere else. Dives me nuts especially when trying to go to sleep and have to constantly scratch! I'm not on any meds but do take ND Thyroid for Thyroid. I've gone through many Thyroid meds over the years so don't think it's the meds. These cases in this thread sound a lot more severe but would like to know what PV is, Thanks

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I have polycythemia Vera and was diagnosed in May of 2023. I had the itching 3 years before my blood counts showed a problem, therefore they didn’t test me but kept sending me to dermatologist which diagnosed it as puritis. I now find antihistamines help the most.

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