Hi , I got diagnosed with pv in 2023 , though I had symptoms of being very tired n the itching arround 2020 , now after few phelebotomies and dieting I’m having less blood withdrawal but the itching is the main problem, it is not stopping any ideas please ?
im supposed to start Jakafi next week and I’m very nervous about that after looking at all the side effects!
Jakafi is likely your best choice for stopping the itching. While side effects can look daunting, bear in mind that just because something could happen does not mean that it will happen. The only way to find out is to try. you can always discontinue if it does not suit you.
All our meds have scary possible sides, I know esp well. So we choose which risks are best suited for the potential benefit in our individual conditions.
There are some meds in development that may target the disease better for fewer sides and more effects. Looking forward to these.
Yes , we need any Med help we can get for less harm.
Since being diagnosed with PV in January I’ve also experienced terrible itching but find that taking anti histamine tablets helps a lot. Also using cooler water to shower. Hope you find relief too.
What kind of antihistamines do you use if you don’t mind me asking?
I’m in England and on Fexofenadine Hydrochloride 120 mg. I still have occasional itching but nothing like before. Hope you find relief as it drives us mad hmm?
Yes ictching is the worst side of pv for myself, I can tolerate n live with all other symptoms but not itching.
Thank you for the info !
Morning!I have had PV for 17 years and am fine barring fatigue now and then but I m 71 this year and still hiking up fells so can't complain.
Anyway
The itching, known as aquagenic pruritis plagued my life for a year. Drove me tears in a couple of occasions and lasted for hours.
I think anyone who hasn't experienced it, doesn't realize how stressful and ghastly it can be.
I swallowed anti histamines by the bucketful, piriton helped the most but sometimes not at all
I began to dread having a shower or bath - so I stopped altogether
We had a bidet installed ( I bought a plastic one on Amazon for travelling) for feet and undercarriage
I wash my hair over the bath, and use the very large square cotton wool pads sold in boots in the baby section, doused in micellar water to gently wipe my neck, chest underarms every other day - but for the first 6 months didn't even do that!
I apparently didn't and don't pong at all so you might like to try it.
Better than itching believe me
I ve been on Jakafi now for 6 months and am absolutely fine. ( Hydroxicarbamide for 16 years but came off it due to skin issues)
As Hunter says ALL drugs come with lists of side effects, but they have to be listed - it doesn't mean you'll have even one.
I haven't tried showering yet, and probably won't, as after 16 years I m used to my waterless routine, but I might try wading in the sea this summer, we'll see.
Or - I might just sit and watch my grandchildren, chilled drink in hand!
Good luck
Give Jakafi a whirl I m sure you'll be just fine
Best wishes
Louise
Thank you Louise for sharing ur harsh experience with pv , I will give the Jakavi a try n hopefully it will works for me n everyone!
most don’t get the listed sides on the leaflet, even if you read the poss side effects from aspirin it’s a bit scary. The have to list every worst scenario.
I was an Olympic itcher, I have even on Rux 7 years and no sides except a tendency to put on weight IF I ALLOW IT.
My itching is completely gone.
Most peoples experience on Rux is similar to mine, it’s a heavy hitter for itch so look forward to the relief you most likely to get.
It can also lower allele burden and stop venisections, for me it’s been fantastic.
it makes sense, thank you for your reply!
Jakafi works and is a safe drug. Every drug, as Hunter says, comes with possible side effects, but they may never occur. I take Jakafi(5 MG 2x daily) and it has practically eliminated my itching and have no sizable side effects. You could ask your doctor to start" low and slow" and see how things progress. There is no reason to suffer with aquagenic pruritis. Good luck and hopefully you will have relief!
i have had pv for only a few years & i get the itching in my legs mainly it feels like someone poking me with a fine needle nighttime is worse and doesn't make any difference afternoon showering .. it normally last about a week or 2 then goes and comes back .. i live in the uk and haven't been offered any tablets etc
Yes I agree , night time gets really bad for me as well.
I’ve had luck using Sarna anti-itch skin cream on Amazon
Thanks for the info!
no problem. Hope it helps
Rux will be a great choice for itching. Jak inhibitors work great for itching and fast. Wishing you the best of luck! Dermeleve is a good lotion to try too. Cerave is a great product line too
Good to know, thank you for the valuable info,I really appreciate it!
Itching is terrible for me. I was started on jakafi 5 years ago. For the first 4 years my itching was relieved by jakafi but last year it came back with a vengeance after a virus. I'm on fexofenadine, famotidine but the game changer was starting betaanaline, which you can purchase from health shops. Its been approved by my mpn consultant. It makes your extremities feel fizzy but I can shower ( not hot) gently pat myself and get dressed without the itch starting. I find a change in temperature can start an itch so get dressed in the bathroom. Keep hydrated and anaemia can make it worse. I hope this helps. All the best
thank you for your info , I really appreciate it , and I really can see how itch can come back with vengeance, hopefully you never experienced it again!
I finally decided to try the beta alanine so many recommended for the itching/water issues. My MPN okayed it. It worked!! Taking a shower without the post-itch misery was so awesome.
Great, I’m happy it worked for you , n yes few fellows did mentioned on here .
Zyrtex or Beta Alanine will help and more safety for prolong use
Isn’t Beta Alanine meant for workouts energy , wouldn’t cause more itching ? People using it they feel tingling in their skin .
Zyrtex could be a helper.
Thank you !
Yes, it is used for workout energy and does give a bit of mild prickling shortly after taking it which subsides quickly, but it for some reason alleviates the water-related itching/prickling many of us get. None of the anti-histamines worked for me, including claritin, zyrtec, etc. which is why I decided to try the beta-alanine.
It sounds like it is worth the try ,
Thank you!
You’re so welcome. I’ve learned so much from the various PV blogs/sites. We do have a mutual enemy to battle. I’ve also been quite impressed with how many very bright, well-informed, kind people are on these blogs.
Yes I agree , lots of useful info on here !
I have read a few of your replies and I would like to add that Jakafi saved my life from the unbearable “itching” ok so I’ve put on a few pounds but apart from that - you will get such relief - go for it!
I’m going to give it a try no better option for me , thank you for the encouragement !
I’m glad that Jakafi worked for ur itching.
Hi there. I Had the itching too. It's unbelievably frustrating. For me two things helped. Make sure you take Benadryl blue Acrivastine daily. I cut out all spices from my food. Only salt. Your food becomes very bland but get used to it. Not sure if it will work for you but worth a try.
Hi there, thank you for the reply, I’m willing to try anything to subside the itching , ur theory of no spices is interesting.
Thanks.
itching skin after showering
Itching solution for some
Itching during the night
