Severe itching

[Folly41]

I have recently issued my first posting when I introduced myself as a patient being treated with Busulfan, which is not commonly used now.

I have E.T. and was transferred to Busulfan earlier this year when my platelets increased after a period being treated with Anagrelide. Busulfan is prescribed for short periods and is closely monitored and I have to go for blood tests every 2 weeks. I have had no side effects and for the past 10 weeks have not taken the drug. However itching has started since and has got worse. The nature of Busulfan is that the itching will go when I start taking it but I need to find out if it is the condition which is causing it or other reasons. The Haematologist is of the opinion that it is not the condition.

I have had itching before but not as severe as it is now. The itching is on the upper part of the body, like a rash, very hot and it stings. I have tried various creams and histamines from the doctor and have an appointment with Dermatology in 6 weeks time.

I have looked at the article on itching on MPD Voice but wonder if anybody can give advice to ease it, including alternative medicines and washing without water.

[bordeauxgirl]

Hello Foley 1

I have PV but also the severe itching, after a year from diagnosis my doc sent me to the Phototherapy dept at the local hospital for UVB Light Treatment, it was marvellous almost got rid of the itching, I have now had two 'rounds' of PT . It takes a huge commitment 3 times a weeks for only a short bout of light treatment but what a huge difference it has made to my well being. I still get the occasional sting or itch whatever you like to call it but 90% of the day is clear. Ask your doc for a referral. Hope you get as much relief as I have had. Best wishes.

[bordeauxgirl in reply to bordeauxgirl]

PS sorry forgot to say ...you also get a lovely tan.

[AndyT]

I get dry skin and itching from time to time but think it's linked to interferon rather than ET itself, as I didn't get it until I started treatment with Pegasys.

It's a bit of a nuisance at times but manageable with antihistamines and E45 cream. Hope you find out what is causing yours...

Andy

[Paul42]

Hi

My sisters itching gets worse at this time of year, it is absolutely to do with the condition, however i think because some pollens are worse around now thats why it makes it worse for her. She does ok with anti-histamines but still has problems.

I do know what works for one person wont always work for the next, but can only advise on what i know. So the itching can often be caused when you get out the shower and bath, this is often the coolness you feel can react and i think that causes histamines to rush to the surface of the skin. You know how it is for most people how cold it can feel even in summer when you get out the bath/shower. You could try either wrapping a warm towel round you so your skin doesnt feel that hot/cold extreme, or a nice warm towelling robe? Try having the water a little cooler too?

That way your skin cools down slowly.

Some people put baking soda in the bath, dont know if that works or not. But worth a try maybe.

Hope you find a solution as there can be nothing worse than itching which wont go away.

Paul

[linds]

Hello Foley 1

I have Mylofibrosis but before that had PV and itching is definitely part of the condition. I found that my itching came irrespective of showering/bathing, mostly at night when I was trying to get to sleep and got hot! I used one of those ice packs that you use for injuries and that helped a lot by wiping across my body. (You see how different we can be). I then was offered a good anti-histamine (piriton was no good for me) and that helped. However, going on to Ruxelitinib was what really conquered the itch but at the moment I am reducing dose so itching may come back!

I do wish you find one of the suggestions a help. Thinking of you.

Linda

[Loubprv Volunteer]

Hi

I have PV and so my experiences and solutions may differ very differently.

Have you tried listing the catalysts for your itching ( pruritis or aquagenic pruritis - like thrush under your skin, a blow torch on the outside and a zillion insects biting all at the same time?) and then stopping doing the daily stuff that makes it worse?

For instance I haven't had a bath or shower for almost 6 years. I have a bidet ( but you can buy portable ones online if you haven't room to have one fitted ) for nether regions and feet, and wash hair over bath. I wash underarms over basin or wipe with flannel.

I never ever wash my legs, and gently wipe chest, neck every 3/4 days with flannel.

Drink 2/3 litres water every 24 hours.

Get out and walk for an hour at least every day, as briskly as you can. Try and do all at once and not in 10 minute trots!

Anti histamines may help, ask your haematologist, if he isn't forthcoming, then seek a second opinion from a specialist in MPN s.

I found cutting out all processed tinned, ready made food, no preservatives, additives or chemicals helped enormously, but as I say we're all different and you need to try this for at least two months or longer.

I also cut out alcohol and dairy produce completely, and drink only water ( tap is fine) elderflower cordial in small amounts and naturally caffeine free tea, NOT decaffinated tea or coffee. That was the hardest by the way, but 4 years on wouldn't revert to my old ways of caffeine laden coffee and tea swilling.

We read a lot these days about the controversy of so called "clean eating " being a fad, but I certainly feel a whole lot better since cutting out the " crap" as my daughter called it.

In fact she has seen such a difference, that she and her husband are now confirmed riverford organic produce converts and don't eat any dairy produce - all full of antibiotics etc.

Anyway enough of my rant. It may be worth trying, as is the light treatment which I haven't tried. I believe this can't be a permanent solution though well worth looking into.

My sympathies, this ghastly pruritis is depressing and debillitating, and only those of us who have experienced it can know what it's truly like.

Sadly the majority of our haematologists have no idea what hell it can be!

Hope you find a solution.

Love

Louise 😊

[jeanr]

I have ET and have itching on my stomach, it gets far worse with the dry heat in the house in winter so I go to every other day shower then and slather on cream on my stomach. However much worse is my scalp at the base of my neck and I have betaderm for that, however its getting quite bad and I may have to go back to the dermatologist that prescribed betaderm. I had not heard of phototherapy.

[Debbweb01]

I hVe ov and they put me in the light machine too and it helped wen I kept it up! Sorry I don't have MLN, but have PV along with APS and have no idea how I got on this site! The photo therapy did help as long as I kept up with it, but I live in USA and it was getting too expensive for me! So I had to stop! I'm sorry if I'm on wrong site just thought I'd let u know about photo therapy! Godspeed