Polycythemia vera and urticaria

[mark382]

Just been diagnosed with chronic urticaria (hives). Does anyone else have it. The itching is driving me mad, but only lasts about an hour or two and then fades and starts up somewhere else. Doc is trying me on antihistamines.

[idi75]

Hi, I suffer with chronic urticaria, it has been triggered in the past by medication, mostly but not exclusively by antibiotics but could erupt without any obvious cause. I take one 10mg cetirizine tablet a day and that keeps it under control but I know within 24 hours if I forget to take it. Hope the antihistamines control yours as well as mine, I know how awful the itching can be.

[skodaguy]

Although I now have MF I had PV for many years and the itch was the worst thing. The only thing I ever found effective was PUVA herapy.Itt is limited in that you can only have a set total dose before it increases your skin cancer risk to an unacceptable level. Things like showers not baths and as cool and quick as possible helped. Anyone with PV has my sympathies.

[siblehed1]

Hi, I'm nearly 9 years with PCV and know that the itching is a major symptom and torturous. Take a couple of anti histamines as soon as you feel the first beginnings of itching. I've also found it useful to keep a cold-pack in the fridge and apply this to the itchy place; it will cool the surface down eventually and the itching will go. I think you can get these cold-packs from the physiotherapy section in the chemists or from sports equipment shop. When your medication for PCV kicks in, the itching will get better, but I don't think there is a cure for it. Keeping cool generally helps. Good luck. J.

[LouisePRV Volunteer]

Hi

I've had PV for 5 years, and the official name for the "itch" is aquagenic pruritis.

I've found a few ways of dealing with it, but it may of course be very different from hives so you really need to check.

If your hives is in fact pruritis, this is how I deal with it.

It may or may not work for you.

I haven't had a bath or shower, or swum, for 3 years - extremities are fine - feet, hands head, hair, nether regions ( bidet) but for arms legs back and torso I use baby wipes. Amazing how non dirty those parts of your body are and my friends and family assure me that I don't pong whatsoever.

Drink at least 2/3 litres of water at regular intervals over 24 hours

Avoid all sugar and alcohol.

Antihistamines also help, I take piriton syrup.

I also avoid tight synthetic clothing but sounds as though you might not be into wearing much of that being a chap!

Hope that helps.

Louise

[StanM]

Hi

I have had very itchy skin for quite a long time. It wasn't unusual for me to have welts in my skin and for the skin to be bleeding off the scratching.

I tried antihistamines with little effect however the Doctor tried a mild nerve tablet this has had The best results but still not perfect.

(If you want further info contact me direct)

I hope this has helped

Good luck and all the best

Stan

[TxTwin]

I have found the combination of Atarax and Zantax bid to be effective.

[MPDmoose]

Hi Mark

Firstly, you have my sympathy - itching is a much worse symptom than most people realise. At the risk of confusing things, I have some advice that is different to what others have found works for them. I have found that it is the cooling down of the skin after a shower or bath that triggers the dreaded itch. I have found that wrapping up in warm dry clothes as soon as I've got dry really helps. Also, for a while, I stopped using soap, switching to E45 cream as an alternative, and used polytar shampoo instead of the usual brands. Thankfully I rarely suffer from itching these days. I hope you find out what works for you - let us know how you get on

good luck!

Jon

[mark382]

Many thanks to all who have replied. Some really interesting ways to help with the itch. Touch wood the antihistamines are helping at the moment. I also drink to 2 to 3 liters of water a day as this really helps with some of the fatigue etc. and was advised by my haematologist. Being too hot, as others say make it worse and the sun makes me feel ill, again my haematologist told me in the early days of being diagnosed with PV to keep out of the sun and well hydrated. I'm seeing my haematologist next week and will ask if urticaria has anything to do with PV - raised histimine levels. Many thanks marc382

[mark382 in reply to mark382]

I mentioned this to my haematologist and she said there was no connection between Chronic Urticaria and PV. Urticaria is a release of fluid from the cells, sometimes caused by histimine and the blood vessels release fluid which pools under the skin. I've read some where that there is a chance of high histimine with PV.

[ida777]

You have problems with eyes also?

[mark382 in reply to ida777]

Yes, I often have runny itchy eyes.

[1342420700]

hi

i have disorder like you and itching is very disturbing

[StanM]

Hi I suffer from constantly itchy skin. My specialist has put me on a low dose of a nerve tablet this has substantial reduced the itchiness.

[bordeauxgirl]

Hi everyone,

Re;Itching.From the start of my PVR itching was a big problem but worse still is a rash on my shins that looks like small scale bubble wrap under the skin, never had anything like this in my life, but the Haemo doc at first said no connection... so why has it appeared now I asked, shrug of the shoulders.!!! after a year of this horrible rash which is hot to touch and itches like mad I was referred to the skin guy at our hospital who suggested Phototherapy . You get naked and stand in a box twisting and turning, it can cause sunburn.especially on parts that never see the sun. (boobs)

It has helped the all over irritation we all seemed to get but it hasn't had any effect on the shin rash. Has anyone had a problem like this, if so what happened , did it dissappear, still present , any product that gave relief? I am pulling my hair out.

I have had to push very hard to get any diagnosis from them but now I am having a puncture biopsy soon.Antihistamines don't have any effect on the itch neither does hot showers etc. It's there all the time like it or not. Any suggestions ?

[Boss1]

Hi there, I have had PV for 3 years and I am Jak2 positive. Weirdly, I have discovered that I can have a bath in the evening with hardly any itching afterwards. I never bath or shower in the morning as it gives me severe itching for about 40 mins. I sometimes get itching without contact with water in the morning when I go from hot (under the duvet) to cold as I get up to the room temperature and sometimes when stressed. I can only eliviate it by a brisk walk or bike ride. It can be quite bad but I feel I am managing it.

[DoubtingT]

I have been diagnosed PV for four years, unusually I am Triple negative and generally asymptomatic, no itch, thin blood, no spleen enlargement, not lethargic, all other blood results within normal range. Having suffered continual "mild Allergies" since I was very young I now strongly suspect that a Mast Cell reaction is causing Secondary Polycythemia instead of my having PV. Put simply my allergy to Beer/yeast causes hives, breakdown of inflammation produces cytokines (prob IL2) which activates EPO receptors to produce RBC's; this would explain a mechanism whereby a person with SP could have low EPO (which is usually indicative of PV) rather than the elevated EPO of SP. From my reading I think there may also be a back-channel where EPO promotes histamines which could explain the itch in true PV cases.

[Hearingu]

Hi, take 1 (120mg) fexofenadine each day. I take it an hour before a bath with oilatum in. Warm water. I have off shower but powerof shower on skin appears to set itching off. I also use imperial leather soap for sensitive skin . Hope this is helpful. Works for me!

[mark382]

Hi many thanks for the advice. I'll give it ago.

[Aldebaran25]

hi , I also have hives , they appeared and started spreading especially on my back about two months ago. Fortunately they don’t seem to itch, but earlier on I suffered from aquagenic pruritus which I keep at bay by having short, tepid showers , careful towel drying (no rubbing) and lots of lovely cream. I am wondering whether the hives may be caused by the aspirin rather than the PV. I read that aspirin can exacerbate allergic reactions.