Does anyone get itch from PRV or other similar afflictions?

[ABman]

Any water on my torso or limbs caused severe 'itch', which felt like a hundred mosquitoes biting at once. Having a bath was like inviting a horde of biters to attack. The med is called paroxetine. If you have the itch then ask for this. It has cut down my itch by about 80%.

[Aime]

Will see the doc as soon as possible for this as the itch is driving me mad just now!!! Diagnosed with PV July 2012 and at the moment, although bloods seem to be ok, symptoms of itching, night sweats and fatigue have all been increasing!! Thank you.

[piggie50]

This is a very strong med, I would suggest you google it before discussing with your Dr. I control itching by having a bath rather than a shower, wrapping in a large towel and getting into bed to dry off. ( keeping warm) My Dr says its the change in temperature rather than the water that causes the itch. When I am abroad in a warm climate I can shower with no itching. I have had PV for 7 years controlled by venesection and clopidogrel.

[ABman in reply to piggie50]

Good to hear from people. I find bathing or showering both the same. It is true that warm days are better, at least for me. This medication was given to me by a noted specialist here. My pharmacist questioned it as I am on coumadin, but he said to try it. I've had no adverse effect from paroxetine -- at least, so far, and the relief from the itch is wonderful!!!

[Dodders]

Thank you for the advice. I do worry about the onset of itching as I've had a few episodes although it sounds as if mine are relatively minor. It would be reassuring to have something ready to (hopefully) alleviate the itching should it ever get much worse so thank you for posting that bit of information.

[Patt]

I have had PV for a at least ten years or more, that itch literally drove me to crying. My doctor did nothing as he didn't know what was wrong with me. PV is a very rare condition.one in a million . Not too many doctors know anything about it, so try &do as much research as you can on your own . Ther is a doctor in the the states that is doing research on at the mayo clinic, you can find him on the Ethernet .good luck. PATT

[Florence1961]

Hi, this subject often comes up and there was a very useful article in MPD Voice last year with patient tips for managing itch - back issues can be downloaded from the website and you'll find other tips on MPD Voice website too.

[tissi]

My husbands white count with PV went up to 35 and the itching started. He had been taken off hydroxy because they wanted to know why whites were so high. He is now on HU one 500mg a day and two at the weekends. Go back to hospital Tuesday but the itching has now disappeared. He was taking piriton 30 minutes before bed which eased it up a lot. I know with him how awful it can be, he used to jump around the bed and then have to get up again.

[ABman in reply to tissi]

Interesting. I don't know what HU is, nor piriton. Were you expecting the itch to decrease or disappear? After my heart attack in August the itch disappeared for a few weeks for some reason, and then came back. I had sharp pains in my feet quite frequently, but they have almost stopped since the heart attack. Strange what works for various people.

[tissi in reply to ABman]

HU is hydroxycarbomide and piriton is an antihistamine. Hubby had permanent cellulitis since stopping aspirin after a major stomach bleed. He is on permanent antibiotics at the moment and since getting the HU back into him the itching has gone. He does get very hot legs below the knee anyone else with PV get this? That has started since the cellulitis started. Thanks

[Optimistic]

I had terible itch from PV but now contol it with UVB , any dermatologist should know about it , its narrow band so safer than sun or normal sunbeds.

[ABman in reply to Optimistic]

That's very interesting! How does it work, I wonder? I looked up UVB and don't see the connection, but so glad it works for you. I'm ok at the moment with the paroxetine, but will keep the UVB in mind. Where do you do the sessions? Is it a lamp you can buy? HOw much time does it take, and how often do you do it?

[fleetpete]

Itching is an unfortunate side effect - as you've probably gathered! Not sure there is an answer...I'd agree with the other answers tho', in that on holiday (where it's warmer) I don't have a problem! I use Oilatum (or Balneum, a soya based product) in the bath water; both of which do help. I do need to rinse the bath out before & after...and don't use soap.

[liloliluk]

I used to get the most awful itching on my legs after showering for years before I found out that it was connected to the PV. It was so infuriating I used to feel like crying. Sometimes I'd also get itchy legs while I was in a swimming pool but never after after swimming. I was amazed when I saw my consultant for the first time and she asked me if I ever suffered with itching - I would never have connected it to a problem with my blood.

Since my blood counts have been controlled (by HU and aspirin) thankfully I've had no problems with it at all and I can shower without worrying about it.