I am 64 with a three year diagnosis of PV, though platelets are more of a problem.

[Kiturah]

With the raised platelets I have had severe itching which is very hard to deal with. Atarax useless, benedryl a little help, a large dose of steroids a little help but brought other problems. Help please. Currently coating the worst skin coconut oil several times a day.

[Senoritakazza]

Hi Kiturah, Apple Cider Vinegar is good for itchy skin, just dab it on with a cotton ball.

Also, peppermint is good too. Preferably the leaves placed on the skin but if you have peppermint tea at home. Make some up and keep it in the fridge. It can be dabbed on with cotton wool as you need it. Hope it helps x

[kitcat49]

I too have a high platelet issue(1148 down to 140,on hydrea) but I've never had an itching problem. Dry skin for sure, I slather with Lubriderm or Glaxol base). I am covered with petechia,torso and legs,not pretty but does not bother me. My feet (toes and balls) burn like crazy at night but that's about it.....Cat

[zfatherhen]

Is the itching worse after a shower? I suggest following some of the Aquagenic Pruitus forums and websites for what those people try for controlling itching. The MPN specialists acknowledge that there are more of certain things in your blood that seem to cause the itching. But, they don't understand the itching mechanism and so don't have answers for treating it. Most regular doctors and dermatologists blame it on dry skin or your mind and give you bad advice. The itching is usually different than a normal itch, more like prickles that start in one place and jump around until they are all over, but usually just the legs and arms and maybe tummy.

A common treatment is to finish a shower by rinsing off with as hot a water as you can stand. Then after drying off with a towel, finish with a hairdryer. Some people megadose on vitamin B, others more sunshine, some UVB treatments.

There were times when my itching was so bad that I would be up from midnight until 6 in the morning constantly rubbing my skin. Finally someone suggested a heating pad. I would wrap an arm or leg with the heating pad as hot as I could stand (153F) for 3 minutes and then move it to another itchy part. That would get rid of the itching until the next shower. Others have had success with ice packs and frozen bottles of water. I finally got relief from really bad itching after I had turned my softwater conditioner back on (it had been off for the drought). So, now I get some some normal itching for awhile which I can tolerate.

[Kiturah]

Z, thank you! I found ice packs helped but unpleasant. I always thought heat would make it worse, but I will try it at least once. I do usually get a lot of sun (courtesy of living in subtropical San Diego). I will check into the water conditioner also. I seldom notice it is worse after a shower, but I don't shower long or even often.

[linbatten]

I have had PV since 2001. The itching is horrible after a shower or just getting a little sweaty. It is usually on my tummy and chest area. Sometimes my legs.I have tried all kinds of things and the only thing that has worked for me over time is to take a normal shower, get into a hot tub for about ten minutes or until the itching stops, dry off and stand in front of a fan. If I am traveling and do not have a hot tub I get outside and walk. My opinion for either remedy is that the blood starts to move faster and takes the itch away. Recently I have progressed to myleo fibrosis and am on Jaackifi . That helps the itching and then the Dr added Visatril. That seems to work. I would recommend to try Visatril

[Kiturah]

thanks. Vistaril leaves me dumb as a post. My itching is better now, I presume my numbers are better.

The docs all say heat makes the itching worse. Any idea why they say that and you and at least one other MPNer say it helps?

[Clive13]

I have PV ET for 4 yrs. Before being diagnosed my dermatologist recommendations were Cetrizine (generic allergy med); warm showers never hot; I use CeraVe Renewing Sa Cream; also used prescription Desonide Cream .05% for chest, prescription Clobetasol propionate cream zUSP .05%. She also had me on some type of HCL when itch was unbearable. THANKFULLY she insisted blood tests and that led to the HCT being 57 and PV. My current care is phlebotomy. Now taking B12 and vitamin D, warm showers with ivory soap for specific areas not whole body, swear by CeraVe with SA (salicylic acid) and cetrizine daily. Gone are those HOT showers.

[lfindley]

I have itching. The literature I've read suggest "moderate exercise"; however, what seems to help me the most is vigorous exercise. If I don't exercise, the days after are worse. So, I spend an hour to two hours in the gym every day. I also find that sun helps me (I wear sunscreen and a hat).

A light breeze causes me pain, i.e., forced air (air conditioning / heat). The solution is I wear loose, light long-sleeve shirts when inside. I'm lucky because a hot shower doesn't bother me. A breeze after the shower is painful, but easy for me to avoid.

I itch all the time. On a 1 to 10 (good to bad) scale I'm normally a 2 or 3. I mention this because if I don't have a good night sleep the itching is worse. I usually can ignore the itching, except at night when not distracted by "life". It can be a vicious cycle because itching can keep me from sleeping, the lack of sleep can make the itching worse. It was serious a couple of times because I was unable to get any sleep for 48 to 72 hours twice. Those times of my life were awful. The solution is I almost always get 8 hours sleep, and when itching is bad enough I'll take zolpiediem (ambien) to break the cycle.

Finally, I have to say that I don't remember having serious itching issues prior to the diagnosis. I did have some itching and saw the dermatologist about it. The diagnosis was funny because he said I had whatever causes dandruff. This was funny because I'm bald and also didn't have the "flakes". This was before the PV/ET diagnosis and same doc says the itching is the PV. Since I didn't have a serious problem before it means I'm either a hypochondriac, the disease progressed or something about the treatment triggered the itching.

[Kiturah]

Thanks for your kind reply. It has useful information, but the devastating itching stopped within 24 hrs of stopping hydroxyurea. My platelets are 1 million now but I don't itch. Maybe stroke tonight though