Aquagenic pruritus/Polycythemia

[Gotroot]

Hello,

I have recently started having severe itching (like prickling/burning) after showering. Initially I thought there was something in the water but after eliminating this possibility, I did some research and came across aquagenic pruritus. I am really scared since I read it is a specific symptom of polycythemia/polycythemia vera.

Can you please let me know:

- Does anybody here has/had this symptom before/with/after their diagnosis of PV? If yes, how long before?

- Do you know if all people who have AP will end up having PV?

My most recent lab tests were in November and they show RBC at 5.01 (limit 5.1), and hematocrit at 0.441 (limit 0.45). So both close to the high end. I will have another test done soon to see where I am.

Thank you all.

[hunter5582]

Aquagenic pruritis can occur for a number of different reasons. Polycythemia vera is one of them; however, having aquagenic pruritis does not necessarily mean you have PV. Sometimes the cause is unknown. It is quite bothersome so you most certainly should consult a doctor about it. They may do a JAK2 mutation lab to rule out incipient PV as a potential cause. You may want to push for that as you are worried about PV.

Hope you get answers soon.

[Gotroot in reply to hunter5582]

Thank you. I will ask the doctor for the JAK2 test but will do a CBC first. I keep hoping the results will still be okay and maybe will not need to ask for JAK2 ? It is like I don't really want to know...

I said PV as it is the one most probable but have read there can be other MPNs as well with aquagenic pruritus as a symptom/first sign, so still very worried. Even if my blood results come back okay I still feel like I am living with a sword above my head.

I also started feeling tired and weak lately, very poor sleep, tingling in hands (mostly right hand). Have pain in neck lymph nodes and two swollen neck lymph nodes but after ultrasound doctor said nothing serious but pain is more frequent lately.

[hunter5582 in reply to Gotroot]

Fear of the unknown is far worse than fear of the known. I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lead a rich life and continue to do so. MPNs like ET and PV can be managed successfully. Proper management early in the process can make a big difference.

I expect you already know that fatigue and tingling in the extremities can also be MPN symptoms. This is not to say that you have a MPN since those things can have other causes too. It is evident that you are worried. Suggest that knowing is better than not knowing.

[Gotroot in reply to hunter5582]

Good point! Probably better to know...

I guess my question should have been if everybody who has aquagenic pruritus ends up having a MPN.

[hunter5582 in reply to Gotroot]

The simple answer to that question is no, not everyone with aquagenic pruritus has a MPN. At this point you have enough worry that it is likely better for your peace-of-mind to find out what is going on.

[21Rosie]

Pruritis is very uncomfortable. I found that OTC antihistamines did nothing for it. My haematologist suggested I try beta alinine - just 1/2 teaspoon before showering. This has been a miracle for me. If I get the itch at any other time of day I take another dose and amazingly it works.This treatment is mentioned on other MPN sites.

Hope it works for you.

Rosie

[Gotroot in reply to 21Rosie]

Thank you 21Rosie. I will definitely look into beta alanine. If you don't mind, how long have you had the pruritus after showering before being diagnosed with MPN?

[21Rosie in reply to Gotroot]

I didn’t have the itching when I was first diagnosed - 8 months ago . It seemed to start at the beginning of our summer (I live in Sydney) and high humidity. Tried the usual moisturisers, antihistamines etc. but these didn’t work. I forgot to mention that Beta Alinine is a powder and completely tasteless when mixed in water. Available here in pharmacy or health food shops. Quite inexpensive too….I think I paid around $A15.Hope it works for you.

Rosie

[lucieboo in reply to 21Rosie]

Never heard of this. I will try it, it might help. Thanks for the tip. 👍 Lucieboo.

[lucieboo in reply to 21Rosie]

Hello RosieI received my pack of beta-alanine today and took my half teaspoonful before the shower and it seems to work! Amazing! I hope it continues to be effective. Thanks very much for the tip. It is easy to obtain, got mine from Amazon.

I had the itching after showering before diagnosis, looked it up, it mentioned PV and it was confirmed by blood test. Had it for 11 years, now myelofibrosis.

[21Rosie in reply to lucieboo]

So good to hear. I believe it is an amino acid and very safe. It’s just amazing how it takes that itch away so quickly.Hope it keeps working for you.

Rosie

[lucieboo in reply to 21Rosie]

Yes, it should not cause side-effects. Thanks a lot for the advice. No idea why it works.

[Tilly_Rose]

Hi Gotroot

I suffer with Pruritis after a shower I have to put moisturiser on immediately as the itching is a nightmare it does subside so I guess I am lucky I am diagnosed with ETJak 2 I might ask my consultant about Beta Alinine as a treatment. Good luck with your treatments.

[Gotroot in reply to Tilly_Rose]

Thank you Tilly_Rose. I tried moisturizer but it does not seem to do much so will look into beta alanine.If you don't mind, how long have you had the pruritus after showering before being diagnosed with ET?

[Tilly_Rose in reply to Gotroot]

About 2years I thought it was dry skin but once I was diagnosed a lot of symptoms were explained to me

[ainslie]

As said on here many people have AP without PV, I have PV and the itch started before diagnosis by about 3 years, all the docs missed the idea it might be PV, my Hct was 55.Your counts look normal. If you are concerned about the possibility of PV probably a haematologist is the best person to see, they can test you for the Jak 2 gene and do other tests. 95% of people with PV are Jack 2 positive but not all with Jack 2 positive have PV.

I hope that helps.

[Gotroot in reply to ainslie]

Thank you ainslie. I did read that aquagenic pruritus can also be a symptom of other MPN not just PV but I am still to find anything on the net saying that not everybody who has AP ends up with PV or another MPN and this is what I am looking for to give me hope. I just want to believe/hope that it is just AP for whatever reason and it will never amount to anything serious. Although my numbers are good they are still close to the high end of the interval; my Hct was never so high, my RBC was high before but then went down. I will definitely have to get tested again and ask for Jak2.

[JP1952]

Hi GotrootI suffered with aquagenic pruritus for 5 years before I was diagnosed with ET then diagnosis changed to PV. Unfortunately, the itching did not stop at showers but was triggered by change of temperature or just moving from room to room. It was horrible and I send all my sympathy to you. The itching was the only symptom I had and my diagnosis was a result of referral to dermatologist. The itching continued after diagnosis but am free from it at the moment because I am taking a drug called Ruxolitnib.

I hope this helps. Please let us know what happens with your blood tests.

[Gotroot in reply to JP1952]

Thank you JP. I am glad to hear you no longer have the itching. Must have been terrible.

[Aime]

Every sympathy, it’s not a nice symptom. As others have said there are a number of conditions which can cause itching. Keeping well hydrated and loads of moisturiser on the itchy bits, helps. As well as keeping cool, cotton linen and clothing. Hope you feel better soon. Your GP may prescribe anti histamines which work for me too. Kind regards Aime 😻

[Gotroot in reply to Aime]

Thank you Aime. The moisturizing does not really work for me, will have to try something else like beta alanine as others suggested and of course talk to my GP. I would prefer to not take medication, I always try to avoid drugs as much as possible. I am in general well hydrated as I have kidney stones so that is not an issue but unfortunately does not help with the itching. If you don't mind, have you been diagnosed with PV/ET or another MPN? And if yes, how long before that diagnosis have you started having the itching?

[Aime]

I was diagnosed with PV in 2012, had symptoms for years before that. I was re-diagnosed with erythrocytosis a few years ago after after a second opinion, just because I’m negative for jak2 and Xeon 12. The haematologist didn’t think I had PV because of positivity for the genes but I still have too many red blood cells! My symptoms and treatment are the same as for PV. Hope that makes sense, Aime 😻