Background : 65 year old male. Asymptomatic PV since 2013.Only take aspirin.3-4 phlebotomies per year.All else is fine.
I can no longer bear the 30+ minutes of intense itching (acquagenic pruritis )after a shower or bath.Has got worse over last 12 months .Hygiene via sponge baths.
Does anyone else have this condition at this level? Any recommendations for a drug or treatment?
Hi there. I had really bad aquagenic pruritis and my consultant prescribed Fexofenadine Hydrochloride. I am now not itch free but the itching is reduced dramatically. I take the fexofenadine daily about 1-2 hours before I shower
Thanks so much for the information. I shall investigate.
Hi, I also suffered with acquagenic pruritus, it was really bad, at the moment I am participating in a clinical trial and as part of that am taking ruxolitnib which has stopped the itching completely. Like ConniesDad I used to take a fexofenadine before a shower and also at other times during the day. I used oil based moisturizer because water based ones start the itching, plus the usual of using non bio laundry products and trying not to change my clothes too often but there were days I couldn't get out of my pyjamas. I followed an anti-inflammatory diet, took a tumeric supplement and did a lot of walking and jogging. These strategies helped but the only thing that stopped it totally ie until rux was a course of photo therapy.I hope you can find something that helps you because I understand your pain.
Thanks so much for sharing.It is a condition that is so strange to others.Happy to hear about the Rux treatment. Which country are you based in?
I am in Wales in UK and normally I would not meet the criteria for rux. It is given to MF patients, younger PV patients of child bearing age, and on compassionate grounds when the patient has tried all alternatives and found to be intolerant.It is available for PV in Scotland and my haemo has told me that an application has been made to the Welsh Assembly for approval for PV patients in Wales. It's down to cost. I don't know the position in England.
Like Baimead I found hot showers better than the tepid I was recommended. A bath was out of the question, and in fact I have still been too nervous to try one.
Good luck. Hope you get some relief.
Have you tried a really hot bath? This seems to work for me and staying wrapped up in a warm towel until you pat yourself dry…
Jakafi (ruxolitinib) is known to be very effective in treating the aquagenic pruritis associated with PV. It is approved in the USA for treatment of PV, but is the most expensive of the current approved medications. It can be difficult to access in some healthcare systems.
Hope you find relief soon.
Thanks Hunter. It sounds like the ultimate solution and I am sure I will get around to that at some point.
I find Fexofenadine prescribed which I take daily has helped. Good luck!
Aqueous pruritis was the first symptom of PV I experienced, though it took over three years to make the connection between the pruritis and PV. An ‘itch’ doesn’t come anywhere close to describing how awful it can be. Eight months on from the diagnosis, the pruritis is now not an issue, though difficult to pin down exactly what has made the difference. This is the list of the changes; regular phlebotomies, aspirin, big increase in hydration, never towel dry after a bath/shower – always moisturise damp skin. I now use Fushi 100% organic Shea butter; what worked best for me was to melt a spoonful in a bowl sat in a larger bowl of hot water. Rather vaguely follow a low histamine diet, I also add olive oil to meals on a daily basis.
Fexofenadine has helped me . Prescribed by consultant. Once my blood s were back to normal level itching stopped . I was prescribed peg interferon to bring levels down so have stopped fexofenadine now . Hope this helps . Good luck 😋
Hi Innessant ,
I suffer with aquagenic pruritis for years never really understanding why I was suffering from it. I changed so many things including my hot water tank but it still continued. After my ET diagnosis and treatment nearly two years ago, it seemed to get worse. So tried so many things by eliminating various things from my diet, body lotions, drinking water before showering, and more. After my last serious bout which went on for nearly 30minutes, I decided to try something else... towel pat dry my body after showering, not rubbing, leaving my skin slightly damp before moisturising and for more than a month now, I have NOT been itching after showering. It seems to be working. Fingers crossed, that it's going to last and is the solution for me. I had thought I was the only one suffering from this!
Anyway, I hope that trying some of the things suggested on this forum will get you some relief!
All the best
LadyA
I have PV and started itching in 2007, mine was intolerable , in 2010 I was diagnosed and like you on venesection only and aspirin. In 2011 I decided to try UVB light therapy, it made such a difference I bought a machine and have used it daily since, I get my skin checked regularly and my dermatologist says my skin is excellent as if I was not using UVB, the key is only to do it for that minimum time you need. When I suggested it to my Haem back in 2010 she dismissed the idea and said it could cause skin cancer, not yet,no indication of even needing anything frozen after 10 years of daily use. My Dermatologist in 2010 said it probably wouldn’t work as I had fairish skin, it worked very well , probably reducing itch by 90%, the message is don’t be discouraged if your medical team is a bit negative about it. Sunshine does the same job if there is any BUT sun is full spectrum UVA and UVB and that’s where the skin cancer concerns come from. UVB light therapy is narrow band UVB only ie 310NM. With the sun it’s hard to gauge the right dose, so overdose is easy. With a UVB machine it has a timer. I also found jogging or cycling etc for 30 mins or so before shower makes a difference, the more I pant the less I itch post shower.The other big hitter for itch is Ruxolitnib, I started in 2017 as venisections were making me too iron deficient. For some it stops the itch right away others like me it took a while but it makes a huge difference. I got it on compassionate grounds in Scotland. I got it because I tried Pegasys and failed and wasn’t suitable for hydroxy as family history of skin cancer causing death, it took jumping through a few hoops to get it such as consulting a Ruxolitinib expert in the US and asking him to write my local Haem, then my local Haem did a fantastic job in presenting my case to Novartis, took a few months but worth it.
Just my story and not necessarily recommendations. It’s important to weigh up the pros and cons of drugs before starting them as they all have downsides. HU has been known for a few to reduce itch, ditto with Pegasys but for some eg me it can make it much worse.
I wish you luck with it as it’s a horrible symptom, only those who have it can appreciate that.
Thanks so much for sharing in detail your story.I have a history of basal cell carcinomas so really try to avoid sun /UV these days...but your UVB detail may be key.Inspiring tale on your quest for Rux.Thanks...I hate to complain after reading some other stories on this site...but it is a horrible thing.
We are all different what might help the ‘damn itch’. I avoided contact with water for over a year. I found changes in room temperature and water temperature changed my reaction. Pegasys helped mine, while I was on a high dose. UVB light therapy also helped me. Keep your skin hydrated. No research behind this but low dose Beta-alanine mixed with water and drank 30mins before water contact helps many. Good luck and try to find ways not to allow this symptom to rule your life.
I'm a fairly new diagnosis of ET / pre-MF within the last year, but have had the itching problems, particularly after a shower, for several years and likely means I was undiagnosed. Here are a few things I've done that have more or less solved it for me, although I still get occasional flare-ups, in order of what helped me most:
- When showering, only lather what needs it. Hair, armpits, groin. For everything else, I only soap it if it's dirty (from bug spray, sun lotion, working in dust / dirt, etc.). This made the biggest difference for me.
- Get soap without sulfates. Sodium lauryl sulfate dries out the skin. Castille soap works well.
- Pat dry only, no wiping with a towel.
- For lotions, cocoa butter works well for me (applied straight after shower immediately after pat dry) but I rarely need it these days.
If you have an itching attack, here's something you can try. Use a hair dryer on warm. Hold it a few inches from the skin where it's itching until it's just slightly uncomfortable then remove. Heat seems to negate the itch reaction and can last for several hours; This may also be why people say it helps to take a very hot shower / bath... unfortunately that strips all the good oils from your skin. You can google it to read more. I've found the hair dryer gives some relief when itching gets out of control. It also works great on itchy bug bites instead of using chemicals / cortisone etc.
Itching is like torture so I completely understand where you're coming from. Everyone is different, but I hope some of the suggestions help.
Such practical advice. I thank you so much.
Hey,
I started developing itching about three weeks ago, particularly unbearable after a shower which would hit my legs and arms, lasting about 30 mins. Didn’t matter if shower was hot or cold..
Beta Alanine has knocked it right on the head… I take a 4g scoop with my morning shake, but you can mix with water / juice. It stimulates a mild tingling sensation that lasts 10 mins or so within the first 30 mins of consumption but it’s not unpleasant..
It interacts with the same itch pathways as pruritus.. but seems to block more prominent itching so I can shower.. go to the sauna etc.
Give it a google, some interesting articles and a couple of studies for aqua pruritus… working for me so far ( fingers crossed ) hopefully you’ll get some comfort too… as it’s an amino acid, it’s more natural than taking high dose anti histamines etc.. so my preferred initial route..
Best of luck!
On it...thanks for helpful reply.
Hi InnessantItching was my only main symptom and the one I most wanted addressed.
My opinion from the partial digestion/understanding of the medical literature is that it is caused by interleukins (particularly IL 31) being released. There’s lots of papers in the dermatitis literature should you wish to go down the rabbit hole.
Sweat from exercise has been shown to contain interleukins.
So two things work for me
1) doing sweat inducing exercise so it is running down my face etc. and showering afterwards. That virtually eliminated the itch. Getting sweaty from an amble in 30degree heat did not work at all, which suggests to me it is having the heart rate up.
2) hot baths (as hot as I can bear) so my skin goes pink and I sweat. If you google health effect of hot baths you’ll find papers showing hot baths are thought to mimic exercise (effect shown in patients with diabetes who can’t exercise). I have been experimenting with how long I need to stay submerged up to my neck and the minimum that works for me is 10 mins. It takes a good half hour to cool down afterwards, just like after exercise.
I am curious about the effect of swallowing various tablets, but in my reading I haven’t been able to find stuff that explains how the antihistamine or whatever impacts Interleukins and there does seem to be some consensus in the dermatitis research world that interleukins are the culprit. I haven’t quite got my head around why MPNs increase interleukin release, I think it’s because of the cytokines storm in our bodies. If I understood what a macrophage was, it might be clearer.
I was SO sceptical about hot baths and have always said “I am not lying in my own muck” but now I see them as a workout for my body when I can’t be bothered doing a real workout AND they calm my skin. I encourage you to be brave, add Epsom salts, get yourself a fan to sit under when you get out and let us know if it works. I cried with relief after my first one. It was so nice to clean and not itching.
Good luck.
I take very hot baths also with Epsom salts in as well. I have not showered in 2 years, just the thought of that horrible feeling has kept me away from trying again. UVB light sounds interesting as does the Beta Alanine.Thank you all for sharing your personal solutions 🙂
Hi Innessant,
This is a frequent topic here and yes to describe it as 'itching' grossly plays down just how bad it can feel. Lots of suggestions for ways of coping on this website but you might also like to explore pvreporter.com where there is a section on ideas for dealing with the 'itchies'. The guy in the US who maintains this website has found that a hot bath at a specific temperature works for him. I have PV, am on low dose aspirin and 500mg/1gm hydroxycarbamide. The hydroxy made no difference to the pruritis. What has worked for me so far is:
1. Initially, paracetamol and anti-histamine (Cetirizine) in the evening to calm things down and enable me to sleep.
2. Because I didn't want to do this for ever, I switched to a cold shower every 2 days (grim in winter!) using an organic soap plus turmeric and N-Acetyl Cysteine supplements daily (both anti-inflammatory, with approval from my haematology team). I don't pat dry but dry 'normally', slight tingling/itchiness for about 30 mins and then that's it. I don't moisturise (never have, am a man!), don't have dry skin and never had an explanation as to why moisturising will help stop the itchies. When I tried it there was no change.
3. Changing soap powders and related items made no difference whatsoever.
4. I kept a food diary to see if anything might contribute and salty crisps and, sadly, certain chocolate seems to aggravate it or set it off.
5. I've not found different clothing makes a difference but I know some people have.
I think based on everyone's comments it's down to trial and error unless, and until, a more medical solution is available. Certainly different approaches seem to work differently for all of us with no one, simple, neat solution, sadly.
Good luck
Paul
Paul, Many thanks for the interesting reply and your trial and error experiences.The human body is so mysterious in the way it works. This has only become unbearable in the last year...and I have had PV since 2013-2014.I will keep experimenting. Thanks again.
You also could try cetritrizine dan ranitidine to reduce the sympton.This is OTC meds and cheap
👍
Hi, sorry to hear you are suffering with that awful itch. Not sure if my advice might help as I see some people were only helped by medication, but worth a shot if you want to try before having to resort to medication, I'm glad I found some things that worked before I did. I'm not 100% rid of the itch but a big I would say 80% improvement in 2 years since it started. I was also avoiding showers for some months at a time and sponge-washing as I felt I would go mad from the itch and was getting goosebumps similar to when you're in severe pain. I think those sponge-washes might have made it worse for me actually.
Anyway, here's what helped for me..... 1)I only have short warm/very warm (but not hot) showers. 2) I only shower every 2nd day not every day as it dries your skin out to shower too often I've read. 3)After trying different 'sensitive' shower gels I found the saviour that changed things for me - Sanex hypoallergenic shower gel or the biome protect one. 4) Dry myself very quickly after shower (staying wet quickly sets it off). 5)quickly put cream all over my body. The creams I swear by is E45 or Dermol (I've been suffering from eczema for most of my life and it works for areas of that too) or when I'm on a tight budget I use any shop own brand baby lotion (love asda little angels) but get tired of smelling like a baby if I use it too often lol. 6) getting dressed quickly after cream as the cold (or warm air in summer) can also set it off. As you've gathered the word quickly comes up a lot, I guess that speed helps has something to do with avoiding big changes in temperatures and humidity perhaps.
In the beginning the change was small but as I continued to do these things it got better and better and now even at the point where if I skip creaming myself for a shower or 2 I'm ok. The last thing I'll add is that I don't wash my hair too often - about twice or sometimes even once per week. If you don't use a lot of product on your hair you'll be surprised how clean it can stay. And occasional dry shampoo if needed. Any use of any shampoo made me itch like mad again but I've recently discovered that Sanex do shampoos too so I'm definitely getting some next shop I do and hopefully it'll be as good as the shower gels.
Hope whatever solution works for you comes quickly as I felt hopeless from that sometimes more than the 'bigger' symptoms of fatigue, bone pain etc. so I sympathise. Good luck and keep us updated
Thanks so much for finding the time to share your learnings.Encouraged that you got as bad as I did and then returned to the shower with your new plans that developed over time.I shall take note and try...again, thanks,Nigel
I have essential thrombocythemia and I get the itching, but a couple of years ago someone on this messageboard recommended showering with Sanex Zero shower gel and that has reduced the itching considerably. When I shower with any other shower gel the itching comes back.
Aquagenic pruritus/Polycythemia
severe itch when contact with water
PV and dreadful itching
Can anyone help with itching problems associated with taking Hydroxycarbamide
Itching during the night
