PV Itching Not After Bathing

Colleen, fatigue and itching are nasty symptoms of PV, period. I am miserable due to fatigue and itching even though I do not take any MPN specific meds.

Aveeno body wash for itchy skin and Aveeno cream are mainstays in my life.

By the way: I've been storing my Aveeno cream in the refrigerator. I imagine the cold product helps decrease itching. But "imagine" may be the operative word here.

trillium @trillium, Uncontrollable itchy Itch (also known as pruritus) As child, use to scream all night and dad walk the floors all night, most nights due to terrible allergies. Passed out during allergy test; allergy shots 2-16 years of age. My family had to itch my back before bed, itch until I bleed and many scabs. Our family used different creams and home remedies trying to stop itching and rashes. I really suffered as kid with allergies.
Now that I'm older bruising; black and blue color is more painful then itching, For years, especially when I can't breath; tinging in my faces, tinging isn't bad in my hands, arms, legs, feet (face is the worst). Love showers; I don't itch in shower (but tingling) only uncontrollable itching at night. Found nothing will help but HU takes edge off, it helps little! HU 1000 mg helps my blood pressure more! Phlebotomy helped get my numbers down but numbers are creeping up and so is the pain and fatigue!

Yes I have itching again too. Worse before PV diagnosed, then it subsided and disappeared (meds? and 3 phlebotomies? in early days?). Since increase in meds dosage (Jakafi) from 10 to 20mg, I’ve had more sporadic itching and always at night; rarely keeps me awake though, after I put some cream on it.

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

Hi @saucy, In this case PV is Polycythemia Vera. It’s
A type of blood cancer where you marrow produces too many red blood cells. This would show up in your blood work. Yours are normal so this most likely wouldn’t be the cause of your itching. But here is a little information on PV.
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
You mentioned that you’re taking ND Thyroid for an under active thyroid gland. Hypothyroidism can cause itching and hives. There is an autoimmune disease that can be a contributing factor for Hypothyroidism called Hashimoto’s Disease. This is an auto immune disease which causes an under active thyroid.
Here are a couple of articles you might find helpful.
One from the Mayo web page and another from Very Well Health
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855
https://www.verywellhealth.com/thyroid-disease-and-chronic-hives-urticaria-3232750
Have you been checked for Hashimoto’s Disease?

Thank You for your reply, I do not have Hashimotos, I go from hypo to hper thyroid. I've been on meds since 1988 and now thyroid is pretty shut done so rely on meds to keep it balanced. Never considered it a cause for itching will ask my doctor next appointment.

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.

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!

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.

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