Itching with et

[chrissie1959]

Does any body suffer with itching who taking hydra a d asprin

[lizzziep]

Just a minute while I finish scratching!! Yes I do, mainly my feet and hands. It's entirely random when it starts and finishes. I've started to take an antihistamine when it starts but I don't know whether it helps it stop or not!! Terrible when you are driving and your feet start to itch madly, also you get funny looks when you are in the middle of the supermarket and you slip a shoe off to give your other foot a good rub!! (I've got ET, Jak 2 negative and take 1000 mg hydrea for 5 days, 1500 for 2 days and aspirin every day)

[chrissie1959 in reply to lizzziep]

Hi lizzziep , thank for reply I also feet hands also neck I also et on 1000mg 5 times,a week and 2 days on 500mg my what I call rest days go hospital every 3 months dad it nearly 7years

[lizzziep in reply to chrissie1959]

I was diagnosed just over 3 years ago. I've been on the hydrea since last October. At the moment I go to the hospital every 12 weeks and see the specialist nurse. I go back again in a couple of weeks so hoping my platelet levels are stable, they'd gone up slightly last time. It's a worry, you've got something wrong with you but nobody can see it, in fact everyone says I look well. But it does niggle at the back of my mind that "something" could happen! Not sure what the "something" is though!!

[chrissie1959 in reply to chrissie1959]

I was diagnosed 6years ago I go to see consultant every 3months been on hydra 5years .now and aspirin 9 x iv had 2strokes one when 32 other 9 years ago lost use left arm and side face x but keeping well at moment x hope you are keeping well x I go back to consultant Sept mid waiting for appointment go to Boston in lincs they fantastic there x

[Helpatlast in reply to lizzziep]

Me too Chrissie I have ET on hydrea and aspirin .... in fact I had the itching a number of years before I was diagnosed and introspect look back and think that was when the ET must have been starting . It is hard going and when it's there the itch is the most intense you can get and I find as quick as it starts it suddenly just stops too ... I know my initial consultant said it often happens when you go from hot to cold etc like getting out a shower or bath and I was surprised when I first saw him and he asked did I have unusual intense itching he used it as part of the symptoms in diagnosing ..... So unfortunately it is part of ET .. And seems they don't know why ..... I use Aloe Vera creams, soaps and lotions a lot and find that helps when it is bad and sore ..... So you have my empathy and as with all things to know others understand helps a bit eh

[chrissie1959]

Thank u for your reply I will give it a try x I see consultant in couple weeks I will also mention it to him x had et nearly :7years also on hydra and aspirin x keeping well tho , hope you keeping in good health to .

[blulou]

Cool showers and post-ablutive lotions help a bit. Still get totally random guerilla spikes almost anywhere there is skin.

[chrissie1959]

Thank u for reply I will give it a try

[maestromaverick]

Hi Chrissie 1959 . I've had PV for 6years now and was on Hydrea for five and a half years . Now on the Relief trial taking Ruxolitinib . Itching is much better since starting Rux but is slowly returning and the tiredness is becoming overwhelming . The other reason I've replied is because I'm at the Boston Pilgrim hospital too under Doctor Rinaldi . Just wondered if he's your haemotologist too . Stay strong and if you are in his care you can't do better . He's saved my life twice now . Once when I became Pancytopaenic and the second time when I acquired sepsis . Thank god for ward 7A .

[chrissie1959 in reply to maestromaverick]

Hi I to are with Dr rinaldi I agree he a brilliant consultant I been on hydra for about 5 plus years had et nearly 7 years x hope you are good health and get on better with rux I mention itching next time I go Sept waiting for appointment x lovely to hear from someone like yourself and to no we not the only ones out there x thanhu

[janesid]

I have intense itching of my scalp when I get out of a shower or if I am in a hot environment. It doesn't last long but is almost unbearable as the more you itch, the worse it gets. I have had ET since 2007, JAK2 positive and am on Hydroxycarbamide 1000mg daily and aspirin.

[chrissie1959]

Thank u for reply I will mention it to consultant when I go mid Sept I itch all over mainly neck and feet . Hopefully he will suggest something x hope you keeping well

[LouisePRV Volunteer]

Hi Chrissie

If you have polycythemia, I think you're probably describing aquagenic pruritis.

A ghastly burning itch.

Is it worse after a shower or a bath or just there all the time?

If it's there all the time that would be unusual and may be a side effect of hydroxicarbamide - and that I can't help you with.

Either way, it's absolutely ghastly - for me the pruritis is a side effect of PV I've had for five years, but I've learnt how to control and live with it. Can give you tips if you wish.

Suggest you ask your haematologist if you're not sure.

Best wishes

Louise

[chrissie1959]

Hi thank u for reply I have et I will ask my consultant mid Sept my itching mite be the hydra then x hope you get yours sorted soon x my itching most time so will ask if a anything I can take or do I've had et nearly 7years and hydra 5 plus years only just started to itch tho x take care chrissie

[PhilC]

I have had similar problems particularly when my body temperature changes i.e after a shower or even going outside, I get a unbearable itch on chest, arms and legs.

I mentioned this to my haemotologist and he suggest taking an anti-histamine but I'm not keen on taking medication that just stops the symptoms without discovering the root cause.

After some research on the net (don't we all) I read and interesting article on Water Cure which suggested part of ther problem is dehydration exacerbated by drinking too much tea / coffee. I have to admit I used to drink 10 mugs of tea on average a day.

The artice suggested drinking 8 x half pints of water a day (male) or 6 x (female), one before and one after breakfast, lunch and evening meal and a couple in between

I tried this and after three days the itching stopped and hasn't come back, my consultant was sceptical - they always go for the placebo effect when they cannot explain it - but not only has the itching stopped but I feel a lot better in myself.

I'd rather drink water than take drugs so I'm a happy bunny.

The main point of the article is that we and our cells are 85% water so if you are dehydrated one of the side effects is the body produces excess histamine to try and compensate, rebalance the fluid levels and voila.

[chrissie1959]

Thank u for reply I will try and also have word with consultant in couple weeks