I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube of steroid cream smaller than a tube of toothpaste!! It might do one leg ,once!They just dont seem to understand that its it's all over and very distressing. I put off bathing now,cant bear it....
Thanks.
Written by
Nursey30
To view profiles and participate in discussions please or .
Itchy skin effects me too, I have pv take asprin and hydroxy, the antihistamines don't work for me. If you search itchy skin on this mpn voice page you will find a lot of similar stories.
Hi Nursey30, I had this same itchy feeling , used to scratch myself till the skin bled, I take hydroxy and fexy to no avail, had it the whole time with PV, I tried every cream known to man still no relief. the Dermatologist just shrugged his shoulders and said 'well I don't know what is the cause' this was after many years, biopsies as well. I had horrendous rashes with the itch too. But this year the rash has gone ,little bit of itchiness still appears now and again.water seemed to be the culprit so baby wioes were my go to wash. I know it goes eb=ventually BUT it is a long wait. good Luck and I hope you get the relief from this horrible effect.
Its so bad isn't it,I could cry,its like a million biting ants crawling all over me..I might try the baby wipe thing in between showers.showers.Thanks.
if it’s a MPN itch I would be surprised if cream helps, I found UVB phototherapy a big help and of course Ruxolitinib, I also find exercise helps, the more vigorous the better, others on here report beta alinine helps a lot for some
I do quite a bit of exercise,fatigue allowing..Walking and the gym..Maybe more time on the rowing machine ,going at a faster pace...Would a GP prescribe this UVB or do I just go to a sunbed place??
The more puffing and panting I did before a shower the less I itched, the more aerobic the better., around 20-40 minutes seemed best. For UVB a dermatologist is maybe best first step, I would avoid normal sun beds because the have UVB full spectrum and UVA, phototherapy is narrow band UVB (310NM) which is allegedly safest. Normal sun beds are a bit like the sun, hence potential for skin cancers
I have tried many antihistamines alone or in combination for my itching, without too much success. The only thing that worked is to have 1g beta-alanine 30 min before the bath (shower), which prevents the itching crisis to arrise. Bare in mind, if one takes more than 1.5 g of beta-alanine, it can get the opposite effect , meaning itching. It worth mentioning that the itching caused by a biger beta-alanine dose has a different manifestation comparing with the MPN one (more beareable).
Also, when taking beta-alanine, you might get a stange sensation on your face ( not annoying) - at least in my case.
for me personally, neither the low dose aspirin, Rux, antihistamines or antacids did anything, BUT Beta Alanine changed my life. 1 scoop in my water every day (sometimes more if I go in the pool or it’s a particular sweaty day given exercise or weather… never more than 2 scoops).
I wish you the same relief I found - it was agonizing and now I have my life back! Happy New Year
Thanks,I'll work my way thru those.I have PV so I am taking Hydra at present.I have a telephone appointment soon with the consultant so can discuss this,armed with my findings....Not that whatever I say makes much difference.
hi. I am 80+ days post BMT and have had bouts of very itchy dry skin, but no rash. I have tried all sorts of emoluments and fragrance free moisturisers but found it made it worse. Most of it just sits on the skin and feels tacky. The best thing for me is using Aveeno Skin Relief body wash during my morning shower and no moisturiser. I only get the occasional tingle now and have very little dry skin. Hope you sort the problem as it is very uncomfortable. Sue xx
Thanks,I'll try that.that.I tend to put on my dressing gown and itch thru it!! ..to save clawing my skin off!!Then ,when its settled I put moisturizing cream on.on.x
Hi I stopped having showers as the itching after was horrendous. Baths only and use bio oil after air drying! Takes longer than using a towel to dry but worth it as rarely have the dreaded itch now.
Hi Nursey30, I have PV JK2 pos and have experienced this on and off for the last 10 years or so. I am on Aspirin and Hydroxycarbamide and occasional venesections. I remember it being a symptom of my PV, pre-diagnosis. It's an indicator for me that my hematocrit is raised and tends to go away once that is back under control. The other thing I have noticed is that it is worse when I shower in a morning; I rarely experience it in the afternoon or evening, which suggests to me that it may be related to the time I take my medication (I take it with breakfast in a morning) - perhaps the effects of the Hydroxycarbamide are wearing off overnight, before my next dose?
This is all surmise on my part, I have mentioned it to my haematology nurse but she can't concur, I appear to be her only patient that has mentioned these timings!
Over the years I have tried different shower gels and creams but unfortunately have not found anything that works; I just accept it when it happens and try not to scratch! The only thing that helps to a degree is if I firmly run the palms of my hands over the affected areas for 5 mins or so after drying, before putting clothes on.
Thanks.I try not to use any shower gels or soap on my arms and legs ,just plain warm water...but doesnt make much difference. When it gets really bad I do tend to think 'is something more going on?" and take myself off for a blood test but have never had any contact ,post test,so presume not.I am finding that nowadays the medical profession, (of which I am one but hopefully I still care and listen to my patients ) are making them selves harder to get to,certainly where I live,its been ridiculous since covid.
I totally understand your frustration! I have PV and get awful itching skin on arms and legs after showering, it’s very distressing. I posted about it afew months ago and was recommended Beta Alanine and it’s worked wonders for me, I’m so grateful for this community 🙏
I take a small scoop in a glass of water 20 mins before a shower. It takes abit of planning but much better than the itch! Don’t take on an empty stomach as it made me sick the first time but if I’ve eaten it’s totally fine. Slight tingle but nothing to the itch and goes away quickly but to me that’s how I know BA is working so once I feel the tingle I get ready for a shower. I only have 2-3 showers a week.
Hello again , I just hope you feel some relief soon . I do wish you well as I know what this can do to yourself, you itch, scratch, then bleed. I wish you better health for 2024. june.
hi , I’m taking Iterferon 90 mcg and Aspirin . I too have itching after shower and trying on clothes. I’ve found taking 1/2 a teaspoon of Beta Alinine 30 mins before shower really helps stop the itching . I was frightened to try it at first as they say you can feel itchy but it’s more like a tingling warmth that isn’t unpleasant and lasts for about 5 mins . It really does work . Hope this helps .
Hi. It was one of the first symptoms I had. As a lifelong excema patient I knew it wasn't that. I have found using natural oil to moisturise my skin after a shower really helps me. Also gently patting yourself dry instead of rubbing. If the steroid cream isn't helping it is not something to keep using. If you are in the UK Weleda make a skin soothing cream that I find helpful too. I hope you find something that works for you.
I got to the stage where I was drawing blood from around my ankles with the scratching. I then discovered Cetraben (Boots - Superdrug) which I started to use every morning after Shower, and in the evening I took one tablet of Cetirizine. It did the trick and since then I’ve had no problems. Everyone on this forum will understand how debilitating this itching can be. Good Luck x
Few just good things to do. Cooler shorter showers, water in general will make you itch, cerave moisturizer is fantastic, can use it at least twice a day or even more. Talk to your dermatologist. There are creams like Eucrisa that you can use daily. Or if very extreme dupixent maybe an option. Obviously controlling your counts is very important as our disease makes us itch. And triamcinolone is a middle of the road topical steroid as far as potency and I prescribe my patients a jar! Only thing is it is a short term fix. Hope this helps! Happy New Year!!!🎆
Hi Nursey , I too suffer with the itch after water contact so I do feel for you. it was the itching and the bruising on my legs from scratching that led me to the Drs thinking I could be lacking in something causing the dreadful itch, which later led to PV diagnosis I too am on high dose fexofenadine 120 twice a day also take aspirin and starred Pegasus interferon in Aug until then managed with regular venesections. I do have a ice gel face roller from amazon which I keep in freezer and roll over the itchy areas to stop the scratching until the itch passes I really try not to scratch now. I also was recommended from CNS to try a menthol moisturiser I googled this and I get precribed Derma Cool 5% from GP leaves a cooling feeling which distracts from the itch. I have seen many times on posts BA works for some but have been bit scared to try myself due to side effect can be itching. Maybe I should give it a go. I do find I itch more in colder months and the warmer months are kinder and strangely being abroad I never itch at all. Hope you find something that helps x
Hi there, very common side affect of PV. My itching has pretty much stop since going on Besremi. But a little trick I learned prior. If you can put your clothing in the dryer while you shower. Dry off and put the warm cloths on I found it gave me relief.
Hi, yes it's a common problem as all the others have mentioned. I have PV and take 1gm hydroxycarbamide daily and a low dosage aspirin daily. My initial symptom before diagnosis was occasional itchy skin when having a bath/shower or itchy thighs in the evening. Some suggestions and personal experiences I have found:
- General advice seems to be to have the water temperature low. I wonder if this is why the swimming pool doesn't do much as the water's not going to be that warm. Also when drying to pat the skin dry rather than rub (although I'm a bit lazy and tend not to do that).
- An early suggestion was if having a shower to have it set to a gentle pressure so that the skin is not being 'bombarded'. Also to have it tepid (or a luke-warm bath). Confusingly some people have found that a hot bath is fine for them as one of the responders has already said - we're all different.
- I've found certain foodstuffs can aggravate this and almost set me up for reactions. I kept a food diary for several weeks which identified some culprits.
- Creams or mositurisers were useless for me. I didn't have dry skin and couldn't see the point anyway.
- For me, a cold shower every few days seems to help reduce the reactions. I do have minor itchiness immediately after the shower for a few minutes but then I'm fine. My hands and face are not affected by warm water thankfully. You have to gradually acclimatise yourself to this, especially in winter!
- Do you keep track of your blood count data and is it worse or better depending on what else might be happening with your bloods? Worth keeping an eye on. I've not found the hydroxycarbamide affects this but have heard that for some people it can be affected by the state of their haematocrit score, for example.
- If I do get the itchies it affects my arms and thighs. I've found the antihistamine cetirizine hydrochloride with 2 paracetamol calms things down. I've not got round to trying Beta Alanine but as others have mentioned this seems to help.
- Some people end up not having baths or showers and use non-water based ways of keeping clean.
I'm told by my doctors that the itch is caused by the mast cells de-granulating but they don't know why this happens.
I think it boils down to a fair bit of trial and error to find something that works for you and trying some of the various suggestions here in HealthUnlocked. Do though discuss it with your consultant and see what they say.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
increase in itchy after 5yrs
Itchiness is fading away...
next question is about itchiness 
Itchy Scalp with Anagrelide
Skin and Hydroxycarbamide
