Do you suffer from aquagenic pruritis connected ... - MPN Voice

MPN Voice

10,428 members14,369 posts

Do you suffer from aquagenic pruritis connected to PV?

Loubprv profile image
LoubprvVolunteer
6 Replies

Hi

I have histamine intolerance ( not PV connected) and in the past aquagenic pruritis which is PV related.

I've started to take black cumin seed oil ( organic from health food shop) but many places supply - only buy decent quality) and it has made a difference re itching. Prob because it's a natural anti histamine.

Take one teas twice a day, in a tablespoon of warm water and honey.

Just a thought anyway. Suggest you google " why take black cumin seed oil " and read all info. Some rubbish American stuff out there but some interesting info too.

Louise

x

Written by
Loubprv profile image
Loubprv
Volunteer
To view profiles and participate in discussions please or .
Read more about...
6 Replies
suzanneh profile image
suzanneh

I am suffering really badly with puritus I have PV. Will definitely be trying black cumin seed oil.

MPort profile image
MPort

Many thanks Louise. Will check this out. It would be heavenly to get relief from itching.

Mairead

Splb3317 profile image
Splb3317

Hi Louise,

Itching is a real problem at the moment. I find that Cetirizine during the day and also Piriton at night do help, but not consistently, so I'll definitely try your option. Thanks.

Sandra

PeterNB profile image
PeterNB

Hi Louise,

I suffered aquagenic pruritus for a number of years, I tried many things, including interferon. I found the only thing that worked for me was UV radiation. Since Jakafi (Ruxolitinib) I no longer suffer

Peter

Loubprv profile image
LoubprvVolunteer

Hi thanks for the replies. I was offered Rux Peter but refused, as that has side effects too, and I'm happy with hydroxicarbamide at the mo.

I've found avoiding bathing showering and swimming to be the best solution.....haven't done any of the above for over 8 years.....do I hum? Don' t think I do, at least I'm assured I don't!

I also avoid air con on legs, and tights. Pruritis now not a prob.

I take cumin oil for itching caused by histamine intolerance- however, read info carefully as the blurb says it can increase bone marrow - not a side effect that many of us want,so go carefully and consult your haematologist.

Louise

Cjsassy profile image
Cjsassy

Great info! My upper back feels spongy, but itches like crazy! I'm going to try this! Thank you!

Anybody take turmeric?

You may also like...

Serotonin as a therapeutic method for PV associated pruritis

worth further investigation-so thought I’d share. Take care!

How do you handle the pain associated with PV?

Are prescriptions FREE is you have been diagnosed with PV?

husband takes a medley of tablets, however not entirely sure the symptoms he has and taking the...

Change from PV?

stopped in November due to persistent nausea. I only take aspirin. Now my hematocrit and...

Update from a PV Newbie

that! I do not take any other medications except low dose aspirin. However, I do take a liquid...