Itching!

[soomoo]

If anyone can please help? I've had aquagenic pruritis badly in the past but the wonder drug ruxulitinib stopped it completely. Such a relief. That was 5 yrs ago and it has returned with a vengeance. My hydroxycarbamide was stopped in February ( after 11 years use) even if I brush my skin now the itch, prickling starts. I take fexofenadine daily , cold showers, natural. Unperfumed products.Does anyone have any personal advice please? I'm at my wits end. Thanks in advance, sue x

[SoledadBarcelona]

An antiinflamatory diet, exercise, etc is good for me. And, about medication, Ruxolitinib goes good, according to some patients and papers. I use organic lavanda essential oil for extremes situations.also Low Doses Naltrexona. Check for it. w.ncbi.nlm.nih.gov/pmc/articles/PMC8568425/

pubmed.ncbi.nlm.nih.gov/165...

[soomoo in reply to SoledadBarcelona]

Thanks so much. I will investigate and try.

[Deevie1]

Hi soomoo,

Have you tried beta alanine? It really worked for me, I was so distressed last October after my itching started again but this has made it so much better. I take 3 grams in water before a shower or if I feel itching coming on. Make sure to take it after food as can make you feel abit quesy but otherwise it works great! Gives a slight tingle very mild but that’s how I know it’s working and only lasts a while and nothing as bad as the itch! Please try it. I got it online. Best wishes 🙏

[soomoo in reply to Deevie1]

That sounds interesting thanks alot.

[TwinMom88 in reply to soomoo]

Just want to add a vote for the beta alanine. I do a scoop in my water every AM (some do 2x a day) and it changed my life. I wake up every AM with some level of itch (sometimes worse than others) but once I drink the BA + water, it goes away for the entire day. I also try to wait at least 30 min between having that and showering, helps a lot. Good luck to you!

[Deevie1 in reply to TwinMom88]

TwinMom88, I do the exact same every day and it works! I’m just praying it keeps working as it’s really amazing and not the worst thing to be taking, plus might improve muscle tone! 💪🏻

[Mazcd Partner MPNVoice]

hi soomoo, so sorry to hear that you are experiencing the terrible itching. Always best to check with your haematologist before using/taking any creams, supplements etc, just to be sure that you can and that there aren't any contra-indications with the medication you are taking. We do have some information on our website about managing itchy skin which might help mpnvoice.org.uk/living-with...

Kind regards, Maz

[Loubprv Volunteer]

Morning!

Like you I had frightful awuagenic pruritis so MASSIVE sympathy. It’s a horrible condition.

Just try stopping bodily contact with water. I haven’t had a shower bath or swim for 15 years. We had a bidet fitted but you can buy a plastic bidet from Amazon for less than £10 - fits over the loo. I wash my hair over the bath. A couple of years ago I started to clean my skin with micellar water but I suggest you don’t do anything for 6 weeks at least - see if it helps. Just use a bidet. I m assured I don’t pong one bit!!

I never wear tights, only trousers.

Hope things improve for you. Louise x

[Wendrew]

antihistamine in the morning and Benadryl at night has helped with itching

[havashan]

I use beta alanine. 1/2 tsp in a glass of water in the morning and wait about 1 hour before swimming or showering. I tried everything before and nothing worked except this. It has been a game changer for me. I have ET and. use Peg to control it.

[originalmyndzi in reply to havashan]

I also use PEG weekly so I'm interested to hear if you've had any issues with the beta alanine. I've been using ex strength Reactine to try to control but I'm up to 2-3/day now which feels excessive and it's not always effective anyhow. I'm very reactive to humidity (I nearly begged for death when I went to Houston, TX) and touch so every morning when I change and every night when I go to bed and pull blankets over me I'm into the prickly/tingly itch cycle, sometimes for hours. I'm going to run the beta alanine by my Hemo anyhow but was curious about your experiences.

[soomoo in reply to originalmyndzi]

Sorry to hear about your trials with the dreaded itch. Betaalanine has been a game changer. I have 1 tsp in water every morning and that sees me through 24hrs. Sometimes but rarely do I need some in the evening. If hot, tired, had alcohol then itching is worse. Good luck

[havashan in reply to originalmyndzi]

I use Peg biweekly and it controls my counts so far. As my platelets have come into the normal range I have not had as much trouble with stinging from water. But, I have never had any problem using Beta Alanine. My doctors think it is great that it works and have no problem with me using it.

[ainslie]

sorry to hear about the itching, as a former Olympian itcher you have my empathy. Do you mean you stopt Rux and now on Hydroxy?

I am on Rux which sorted my itch but pre Rux I used daily low dose UVB phototherapy, it worked very well for me , say 90% improvement, others report good results too. I also find 20-30 mins of puffing type exercise before shower helped. Some seem to do well with beta alanine, if using, start slow because it can make you very tingly, as Maz said watch any potential interactions

[KLCTJC]

I work in Dermatology so we do so many things for itching! But OTC try dermeleve, great for itching. Cerave products are awesome! But in dermatology we can do more if OTC doesn’t work. But these two OTC things are great to try!

[bjay22]

I live in the US and I take Claritin for occasional itchy hives. Before taking that, I suffered horribly & just a cool sheet on my legs would trigger the hives. Claritin took care of that for me & I only take it as maintenance now. I think you can get it in the UK but it's spelled Clarityn. Good luck.

[Bmj63]

hi i had aquagenic pruritis badly since taking hydroxy.nothing seemed to work then consultant suggested i try beta alanine.not gone completely but much better.