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Terrible itching

This morning I had a small warm bath and have been suffering with a terrible stingy itching ever since. Though I have had very mild itching for quite a few months, I have been able to cope with it, covering my body in Johnson's baby powder. BUT

What I forgot to put in my bath today was my grandchildrens E45 junior foaming bath milk so I am thinking this must act as a barrier.

I am tempted to get back in the bath but am too scared to because for the last 5hours I have been going nuts with this diabolical itch.

Has anyone tried E45 junior foaming bath milk?

I am beginning to feel this illness is slowly stripping me of everything I enjoy. 😬I was quite optimistic and was open to the challenge this illness brings, but this itching seems to have triggered a helpless low mood , 😢 memories of no one believing what I was saying before diagnosis and no one apologizes for their lack of belief.😨 Not being able to eat the foods I enjoy, not having the energy to do what I enjoy, not being able to go where I want, not being able to get a good night's sleep, headaches, ringing in the ears etc etc the list goes on and on. The never ending bloody story.....😱

So I feel like ripping up all my chemo pills today and sticking them in the bin. I feel very angry, depressed , agitated and totally pissed off, 😢☹️😖😬. Can't even enjoy taking the dog for a walk, because it made the itching worse this morning.

Looking for inspiration 🤔 😎

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Sorry to hear you are suffering so badly.

One small compensation is that the itching is a good prognostic factor. Don’t understand why but I have confirmed this with two Hems.

I’ve managed to pretty much control my pruritus with a mix of

1. Diet - reduce high histamine foods and increase low histamine or even better, eat more anti histamine foods (unfortunately this means the likes of watercress, pea shoots, garlic, olive oil, onions rather than ice cream and chocolate!)

2. Get dressed ASAP after bath/shower. Make sure itchy skin covered. I use Dermol 600 in the bath and Dermol 500 as soap. Apply Epaderm cream immediately after bath/shower.

3. Exercising immediately before bath or shower helps

4. Some people claim great relief with UVL or sunbathing (but have to be very careful if on HU).

5. There are various antihistamine pills, most over the counter. I’ve never tried but some report success.

Bottom line is we all seem to respond to different strategies/drugs so please don’t give up. Talk to your Hem about it. Perhaps a change of drugs, again some people have reported great success with Ruxo which is an anti inflammatory. I’m on Pegasys and convinced it has helped me.

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Thank you very much for replying Paul, I will give your advice ago. The itching seems to have settled down a bit now and what itching is left, is bearable.😏 I have eaten, had a sleep and taken my pills, so getting back on track.

Best wishes

Angelina X😎

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Hi Paul - re the itching being a good prognostic factor - that’s interesting. Could you elaborate a little on that?

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Hope this slide reproduces, one line from a 2016 Presentation says:

‘Pruritus considered a favourable indicator, mechanism unknown/unproven.’

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Try Doublebase Emol Shower Gel xx

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Thank you very much for replying Eleanor, I will give it a go, 😊

Best wishes

Angelina 😎

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onlinelibrary.wiley.com/doi...

Interesting document

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Thanks Paulx

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Feel for you,our conditions are rotten sometimes.The itching and blotches and rashes get to me too.Strangely enough,we have just changed our swimming pool to salt water...I was scared to go in to cool off,,,but did bit by bit..now I find the salt water does not cause itch,and has soothed the rashes that are the bane of my life..The water is warm ,sun here is so strong people don't need to heat their pools.I began to wonder about Epsom salts...would they soothe itchy skin? Years ago we had a top competition horse who continually had nasty rashes and spots ,we used to bathe him with Epsom salts and flowers of sulphur....I think we get to the stage of trying old fashioned remedies.I might add the shower after being in pool ,made me itch.....maybe it's shower gel....I've tried dozens.

Best to you,don't get too stressed ,makes us worse.Sally

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Thank you Sally, I wondered myself about Epsom salts but I think that is more for pulling the crap out of your system. What about dead sea salt? When I was living in Israel, 70s,😄 people would flock to the dead sea, with different conditions. Got me thinking now Sally.

Thanks for your support and enjoy the swimming pool, glad the salt has helped

Best wishes

Angelina 😎

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I’m on 3 anti histamines a day plus I use Olay moisturiser which I can’t buy in U.K. but get on Amazon. Aveeno sensitive was also helping as well as keeping ultra hydrated and cotton clothing, bed sheets, etc.

I have PV but not on chem meds yet. Hope this helps, kind regards Aime xx😺

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Thank you Aime, it was very interesting to hear you are not on chemo meds because I thought it was the drugs which were causing the itching. I have PV and ET.

Thank you for your advice, I will give it ago

Best wishes

Angelina😎

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Hi Angelina,

I have ET, no meds aspirin only, and I get intense burning itching after a shower mostly on my arms and legs, I manage it Body Shop body butter straight after, it usually works after a short while, but I expect some of the other products mentioned by other people are more suitable if your skin is too sensitive to use something like that 😉

Wendy x

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Thanks Wendy, I used to use body shop products years ago, I found it helped after I had a mastectomy but I thought they were out of business because all their shops have disappeared from the high Streets. I will look online. Thank you

Best wishes

Angelina 😎

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Hi Angelina,

Oh I'm in NZ and we still have the Body Shop high street stores here, as well as online. I'm in the UK in just over a week though and was hoping to get another one then to save carrying a whole new tub, so maybe I'll have to get it online too 😉

Wendy x

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Check on line where they have stores, they may have a store in a store in places like Oxford Street / Bond Street London. Enjoy your trip, I hope the weather stays reasonable good for you, raining at the moment so bring a waterproof 😂

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I will be having photo-therapy for my itch. 3 years and I’m going mad. I’ve had enough. I will post how it goes. My dermatologist was very understanding and supportive

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Very interesting posts. I had the intense itching way before I was diagnosed with PV - have been on hydroxycarbamide for 3 years along with aspirin and have to say the meds made NO difference to itch.

Mine is definitely getting worse- temperature change of any kind now brings it on / I could write a book / I’ve truef everything / phototherapy certainly eventually did help a lot but 2 weeks after it was back to normal.

I have heard also that with itching there is a better prognosis but what good is that when your whole life is being ruled by this itch - you have my every sympathy and understand all that you write Angelina.

I walk a lot and that is my relief. No one could understand this condition unless they have it . Sorry to be so negative. I hope you do find something that helps.

Anna

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Thank you Anna, you are not being negative, just truthful, that is what really pissed me off yesterday because the walking seemed to increase the itch, where like you, before yesterday I found walking through the park helped. Thank you for replying

Best wishes

Angelina 😎

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Hi sorry to hear about the itching , but see you have had good advice and new things to try. I find that I can only have my baths at night, cream myself after with Dove for very dry skin and then into cold cotton sheets. By time I wake the itching has calmed down. Just now on HU not noticed any difference yet... and ringing in the ears I have had for many many years now so also not necessarily part of drug use... Hope this was just a bad day and things are settling down..

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Thank you ET500, it is calming to know I am not alone with all these annoying symptoms and amongst people who know what I am talking about, I find it very comforting. I feel stronger today, ready to fight another day.

Best wishes

Angelina 😎

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Glad you’ve vented your feelings only MPN sufferers understand.

You seem to have it tough. I experienced tinnitus for a short period of time and it was horrendous.

Hope things improve for you soon.

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My heart goes out to you as I used to suffer very badly with the itch. I tried every suggestion that I came across and only a few things helped. For example:-

- Wearing soft natural fibres next to your skin.

- Keeping the cool air off your skin.

- Every day gently applying an oil based emolient or moisturiser to your skin, (water based ones made my skin itch as the water has to evaporate and when the skin surface cools, that's what seemed to cause this awful stinging itch).

- UVB phototherapy definitely helped; but you have to build up the exposure gradually and I found that I needed about 5 mins in the light box twice per week to get maximum benefit, and then if I stopped say to go away for a couple of weeks then the itch came back as bad as ever. But it does relieve it and I would really recomment UVB if you are suffering a lot; Get your GP to refer you; my dermatologist was very understanding and kind as was the nurse; I was very lucky. You can try sunbathing too but be careful not to over do it and don't burn yourself.

- Soft sheets with a warm feel helped me at bedtime and maybe put the leki blanket on for just a few minutes to take the chill off ...... that helps.

- Eventually I gave up showering and bathing because it was just too traumatic. I have a bidet and I used that a lot, also wet wipes and I washed my face and hair in the basin in the usual way. That made life a lot more bearable. I made my husband promise that if he ever got a wiff of BO from me then he was to tell me immediately. I coped like this for 5 years and did not receive any complaints from anyone. So, it is possible to manage your personal care this way. Now, I am taking Ruxolitinib and I don't have a problem at all. After 10 years of gradually getting more and more poorly, it is a huge relief to be on this medication. My life has been given back to me 'cos all the sympoms and pain have gone completely. It seems like a miracle. So, don't give up there are new treatments out there now that do really work. With very best wishes, Lyn

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I agree with all your comments and suggestions - I am hoping that my haemo will prescribe rux as that seems to have helped many people - one other suggestion from me would be to try not to touch or rub the stinging areas as it just prolongs it - I pace up and down the hall till it’s bearable! 😊

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Thank you,

Best wishes

Angelina 😎

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Thank you Lynn, I am glad you are feeling a lot better now 😂 I feel stronger today and it is a comfort to have people who understand and advise on coping mechanisms, I don't feel so alone and alienated. The itching is not as bad today, more like fleas dancing 💃 Best wishes

Angelina 😎

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Thank you Wyebird, it is very comforting to know others understand and I am not alone. I feel stronger today, though the tinnitus seems to be in competition with the head pains, who can sing the loudest, still got itching but it is more like fleas dancing 💃🕺

Best wishes

Angelina😎

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My itching is triggered by temperature change. I can’t do warm baths - it has to be hot. I can’t shower at all. I wear leggings all year round ( rolled up slightly when it’s very hot). I have to dress straightaway when getting up or the itch starts. Mainly my legs affected and yes, I take a brisk walk when they’re bad.

I’m on Hydroxycarbamide and Rivaroxaban- the latter lists itching as a side effect.

I take antihistamines if required-but don’t use creams or lotions as this aggravates the itching for me.

It does seem that you have to find what works for you.

It is debilitating- more than most people realise.

Hope you find what works for you.

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Thank you Sallush, I used to love a deep hot foamed bath, I would spend an hour or so pondering life whilst watching the bubbles disappear. It seemed as soon as I said to myself how lucky I was to be able to do that, slowly it degenerated to a quick shallow warm bath and now after yesterday I am scared to get in the bath.

I am on hydroxy carbamide too, though it seems to be more the illness than the drugs we take. There is a post from Lynn she changed to Ruxlitinib and says she doesn't have the problem anymore

Best wishes

Angelina 😎

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Hi Angelina,

Reading through all the comments on your familiar post there does seem to be a lot of variation in the way people are tackling this itching that comes with PV. I have had it for seven years now and been taking Hydroxycarbamide for four of them. The itching has been coming and going through all that time and has been severe many times. I understand why you wanted to just throw everything out the window. That's the condition, which is very stressful. For the last 8 weeks I have not been taking my Hydroxy. but instead taking CBD Oil that I get from cbd4u.uk which I thoroughly recommend. I've got back into being able to take baths again as well as hot showers and I haven't had a single itching frenzy during that time. It may be quite pricy but there are ways to decrease the cost by becoing a preferred customer with Kannaway's who are the producers of this particular type of CBD Oil called full spectrum. It's completely legal in most places around the world as it contains very low THC, which is the psycho-active ingredient. I take two teaspoons a day first thing in the morning and it is working a treat for me.

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Thanks reliabletony, I have CBD oil, it has been stuck and being held by customs, i keep phoning but don't seem to be getting any answers, as you say it is expensive and this time I got 3 bottles, so I am pretty peeved 🤑 I don't think they are going to send it on to me.

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Wow I am definitely going to look into that thanks

Anna

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My goodness!!! I've just read your post with astonishment; you're the first other ET itcher I've found. Itch is my personal hell but although it's a known ET symptom (and much more widespread over my body since the first bleeding symptoms appeared that led to the blood test and ET diagnosis), I've actually had intermittent pruritis for a very long time. I wonder if I've actually had ET for a very long time too? How long have you had your itchiness?

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Hi Jdogs, sorry to hear about your itch, terrible isn't it. I've had mine for quite sometime but it got a lot worse this summer. I too, look back on my history and can see the development of the disease long before I got the diagnosis which was 2014. Mine appeared on a random blood test, though I had been complaining to the GP with different symptoms for quite a few years to the point I'm sure the GP thought I was making it all up. What do you take for your itch, do you have any remedies 🤔😀 Best wishes Angelina

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