Hi Guys, does anyone else experience variations on how itchy your skin gets? My blood counts are fine so I can't blame them, I'm drinking plenty of fluids and using my Aveeno moisturiser which usually does the trick but the itching is driving me 🤢demented!
There must be some reason why this varies - this is the worst I've been for a while and it is so annoying I'm getting bitchy sometimes too.
Kind regards Aime xx😿😡
Hi Aimee, what a pain! And yes, I totally vary in the itching. It's very annoying. 😡 I know if I eat meat, or some wines and sadly some cheeses (boooooo!) I will wake up itchy. The water helps to a point doesn't it? But only to a point I find. Lots of veggies and fruit help but mostly, for me, it's avoiding lots of the stuff I love. Yawn. I'm sure it also fluctuates with my blood. I didn't have a venesection for over a year and in that time my itching was really manageable and predictable. I'm just post venesection so bloods still adjusting and I'm definitely itchy. Here comes an itchy summer..... Xxx
Hi Amie I am very itchy today was thinking the same has you this morning why does it change from day to day I was fine in the very hot weather even my eyes lids itch today it's a pain my blood beening done next wk let's hope tomorrow is better best wishes Poppy 6060
Much sympathy Aime, think I am lucky,I itch after showers etc,try to be careful with products ordinary good makes of soap are a no no,stick to gels ,moisturisers for sensitive skin,probably not available in U K,here there is a vast choice...all expensive of course, wine ,salad dressings,all set off the ulcers and itches..what about anti -histamine or a gentle tranquiliser ?Hope you soon improve.....other thing is certain fabrics, I try to stick to pure cotton or cashmere when it's colder.No wonder you feel bitchy it's a horrid thing.xxSally
Hi Aime, , I can empathise as I had horrible hitching for years , heat exacerbated it with me. I didn't take a shower only a Luke warm bath , funnily enough a Luke warm shower was no good either and I thought it must be the water hitting my little bod that aggravated it.In fact when first diagnosed the itching was so bad after a shower I cried with the extreme discomfort, it was like being bitten by thousands of ants. Definitely don't want that back.
I also itches when I got too hot in bed and as I got regular night sweats this was common for me.
Then along came Ruxolitinib and whilst it didn't shrink my huge spleen it stopped the itching and night sweats almost immediately. I took a shower for the first time in about 8 years with zero itching.. Relief at last. I have had minor episodes since my transplant as my body adjusts but it's a complex area.
You sound like you're doing all the right things and I hope you also get some relief from this debilitating often under estimated symptom.
Chris xx
Thank you Aime and everyone else. Itching led me to getting the PV diagnosis, a bit of a journey that one. Baths were out and showers after an anti histamine and not very often, with much creaming. Then it became so much better, I can take a bath, oh joy. I think it must have been when my blood levels improved post venesections, then starting hydroxy this year. This last week or so though the itching seems to be becoming an issue. I was borderline needing a venesection at consultants last week. Fingers crossed it is a passing phase. Be well
Mal x
Thank you Mal and Chris. I have been lashing on the moisturiser- I think little and more often seems to be easing it. I agree Chris it's like a load of ants having a munch. I describe it as a deep, sore burning itch which "normal" folk don't appreciate when you say your skin is itchy.
Kind regards Aime xx😺😺
I can reallyempathise. Itching is one of the worst side effects/symptoms for me. I am on fexofenadine which is an antihistamine which I think helps a lot. Cartainly the itching is on the whole less problematic apart from itching on the scalp. It could also be that I am having very few venesections now just taking the hydroxy and aspirin.
Hilary
Thank you Hilary, I'm on phenergran (2 at night) plus loratadine in the morning so that should be plenty of anti histamines. I have a haem appointment on 6 September so if it's still as bad, I will ask for a different tablet.
Kind regards Aime xx😸😸
Hi Aime
This is my first post , Im new to the site. my unbearable itching has led me to seeking out support and I found HealthUnlocked and almost straight away your post ! I have PV and ET. For 3 years now, and Im on Hydroxy and aspirin. My 'itching' feels like having thousands of ants under my skin with sudden spikes of intensity that almost make me jump and i have to itch them. Its not rashes or dry skin or topical itching. I suppose a blood itch! Does this sound familiar to you .. or anyone? I can't sleep which is of course making me hugely 'bitchy'! What can i do?! I wonder also why its so much worse and constant in the last few months. I didnt have it before. My bloods are fine too , i don't drink and eat healthily... mostly. Already the site is a help. Just venting really
Fliff
probably this should have been a post not a reply. sorry... not got a hang of it yet!
Hi Fliff, welcome to the forum but sorry you are suffering from the dreaded itch, every sympathy. I drink extra fluids, try and keep as cool as possible and have antihistamines also. I find Aveeno moisturiser helps too.
I'm not sure why mine has flared up just now as my blood counts are ok too. Hope you get relief soon. Kind regards Aime xx😺😺
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