ITCHY SKIN

[tissi]

Sorry that was itchy skin, had fingers on wrong keys! Can anyone suggest anything to try for recently diagnosed husband MF, waiting on appt at hospital but every bedtime wham the itching starts. Strange how its always at bedtime. Thanks

[Aquaphobe]

I suffer from this aquagenic pruritis too. It started just a few months after my diagnosis with PV. It is a a difficult issue. I find I have itching whenever the temperature changes suddenly. It includes; just after going to bed, when I am nice and warm under the quilt; After a shower; in the autumn when mornings are cold and I move from inside the house to oustide; moving from a warm room to a cold roon, Sitting in a room with strong air con. Going out in the rain or going out in a humid atmosphere.

I have come to the conclusion for me that it is a temperature change rather than water problem. The itching can last up to an hour.

I have not found any magic cure I am afraid, but what I do is as follows:

I have reduced the number of showers I have to two a week and try to have exercise before; I find that if I am warm when I have a shower it has less effect. I have had baths in the summer and sometimes these do not casue the itching. I never have the water too hot so the temperature change is not too great, and my family say I must have the world record for the shortest shower;

When I do get the itching I just try to relax and let it happen. I take myself to a desert island, two palm trees white sand and a hammock and try to relax. It takes the edge off. When it is really bad I find that if I impose a small amount of a different pain say pinch the back of my hand and concentrate on that pain rather than the itching it can help.

I do have to psych muself up fpr a shower if I have had a particularly bad experience but I am finding these days that it is more bearable . Obviously I have to plan a shower as I could not have a shower, get dressed and then drive to work.

There are a lot of us with this problem so i am sure others will have sugestions too.

[wendyhelen]

I find Eurax very good I have had MF but now Leukeamea for the past 2years since diagnosis

[sheldale]

Hi Tissi

When I tell you what works for me you will probably think I have totally 'lost the plot'.

I was told that this is an old fashioned recipe to aleviate itching and I must admit I didn't think it would work, but it does.

Get a packet of dry porridge oats and put a cup full into an old pair of tights (you will now be thinking she has definately 'lost the plot') now tie the tights to the bath taps so that the water will run through the oats making the water milky looking, and just lie and soak in the bath.

This has worked for me and is definately worth a try, hope it helps.

Take care

Gwen

[tissi]

Thans to all who answered about the itchy skin. We will see what doc says on Tuesday. A piriton tablet seems to work a little bit.

[ABman]

I have had PRV for six years, and the itch has been bad on my arms, legs and torso. For some wonderful reason I can wash the parts that need it most without any itch. Go figure! Recently I had a heart attack and just before that event I suddenly had no itch and could shower with the best of them. Alas, that has worn off and now I'm back to itch. Even putting on a cool shirt could bring it on, and my own perspiration would too, especially if my chest got a bit cool. There seems to be no cure. I've tried Aveeno in a bath and it doesn't help (rolled oats preparation), but this disease seems so individual that you might try it to good effect. We have a bizarre disease, don't we?

ABman

[Joprv]

Greetings to you all from Australia....i read all of these answers and feel great empathy for all of us with this wretched debilitating disease, this forum for us to share is a great help.

I had PRV for past 5 years and now transitioned to MF. The itching that we refer to can be caused by vibrations on th veins/skin..... I am under a wonderful oncologist to deal with my many complications, itching/burning just being one of the many debilitating symptoms. As I read all of the various responses it all relates to the compression/vibration on the skin/veins causing stimulation of histamine in the blood, then from this comes the itch/burn. I ask you all to try bathing, no showers, nothing that has you placing any movement on the veins, iv'e not had a shower for 5 years, I used to end up in the emergency dept having injections for allergic reactions given my itch was so horrendous, PRV and other MPN excrete large amounts of histamine, reduce your histamine intake via diet and remove the vibration, including how you pull on your clothes, I cannot tell you how much relief you will feel just by doing this. My oncologist specializes in MPN, my story is most interesting, I am more than happy to share if any one has some specific question I can respond to, cheers for now, Jo

[tissi]

Nice to hear from you Jo. Tony diagnosed a week ago after PV for six years. Internet so negative, we go back to hospital tomorrow which we are dreading. Thanks for the info re the itching. I am just so terrified of losing my hubby before we even retire.

[Optimistic]

I use UVB for itch. I went to see a dermatologist privately and asked him to try the UVB , he said because I had light skin it may not work, the bottom line is it has worked fantastically. Prior I would itch horribly and viciously for 45 mins after a shower. Now I have the lamp in my bedroom and use it for a minute or so per day and I hardly notice the itch after a shower especially if I do say 30 mins jogging/ sweating etc before shower. The UVB they use is a particular narrow band, I think its 310. Best do it all via a dermatologist (no sunbeds). If you have any questions feel free to ask me on here. MPD voice may also have soem info on it.

[hackett]

Its reassuring to hear from someone else in AUS. After a particularly bad itch attack I haven't had a shower in some 2 months. The fear of itch is now too distressing, though it must be horrendous beyond my understanding to warrant a hospital admission. I am pleased the warmth of spring has arrived though the cold early mornings require caution. How one dresses and what one wears seem to be important. If you don't mind please tell us more about a low histamine diet. Is it effective? Regards