Wondered if any of you out there have found any solutions to the dreadful itchies?
They are the most prominent symptom for me. Diagnosed 6 years ago at 51 with PV Jak 2 positive. Occasional venesection and daily Aspirin so far. I have extreme itchy legs at times (seems no pattern as to when it comes but it will be mornings) and the only thing I can do is go for a very brisk walk to eleveate the symptoms. This means getting up early enough to do this to try and 'outwit' the itchiness before they come! (I work freelance). It's always in the morning and I never shower or bathe then as it would bring on extreme symptoms. I shower or bathe in the evening and symptoms are only slight then weirdly enough.
It seems to be brought on by getting out of warm bed into cooler atmosphere and can also be brought on my changing clothes in the morning.
What does everyone else do? (and what meds are you on...did this change?) Would love to hear from you.
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Boss1
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Taking Zyrtec and Zantac both together ( also known as cetirizine and ranitidine) is worth trying. They are over the counter antihistamines that block 2 different histamne receptor systems. I heard Reuben Mesa suggest it once as an old establishd combo that worked. I don’t get itches ( yet) but I do get an unpleasant irritated swollen face feelng. The combo works for that . It can give me a dry mouth is the only downside.
Diet changes have helped me radically. I couldn't have a bath or shower without itching so badly that I wanted to scratch through my skin. I stopped drinking orange juice and other citrus drinks and limited my raspberry and strawberry intake, whilst TRYING' to follow an anti-inflammatory diet. I bath the day before my next injection is due and it seems to work. I do get slight itching (like now, just sitting here) but if it gets worse, I take low dose (4mg) antihistamine, chlorphenamine. I find long lasting ones have too many side effects and don't do the job as effectively.
Beside this, I use Oilatum bath formula in the bath every time. Body lotion (basic, perfume free) after bath and every day to keep moisturised.
These may help you. I found that nothing the doctor will give you for treating the symptoms will do any good. It needs treating from the inside!
Hope something here give you some relief. It certainly helped me. x
Thanks so much for replying! I too follow a pretty good anti inflammatory diet and no natural products etc...thanks for antihistamine advice. Will try it.
Hi as Jack says above it is affected by things outside but needs treatment from inside. After a long time, even before I was diognosed, I couldn't touch water, even on hands. It took months of research and misery until I found a plan that worked for me. I know from reading the posts that it is the opposite to what works for most people. So. If I can keep warm/hot I can reduce itch sometimes to zero. So I have hot baths and keep body, legs especially, tightly wrapped up. No showers as cooler water and air would bring it on. I had avoided swimming for years. Then I worked out a similar routine by hot spa, swim, hot spa or steam and very hot shower. So far so good.
I find that when away from home and if I have to take cooler showers then the first aftermath is 20 misery but after subsequent showers it gets much worse so there must be histamine responses that don't get triggered that stay dormant with heat but once activated gather force. Since I don't want this to happen, and I want to keep clean, I make it a priority to go to places with baths!! But that's not always possible.
Hope you can work out a plan that eases the dreaded itch.
Thanks so much for taking the time to reply. Really interesting. I don't shower as cold air or contrast with hot and cold brings it on. Hot bath in evening will bring on just a little itch but it goes but mornings will be impossible as severe itching where I would want to thrown my self off a bridge! Always legs, sometimes lower ofter whole leg and can be ghastly on top of feet!
I suffered with itchiness everyday for several years. At the time I did not know that this was related to having an MPN (I have MF, possibly from PV and am JAK2 positive). I put the itchiness down to stress and tiredness as the only times it did not occur was when I was on holiday. I managed the itchiness through exercise, either walking or running seemed to cause it to go away.
It was only when I was referred to my Haematologist that they link between my condition and itchiness was explained. I am now on Ruxolitinib - my itchiness disappear just a couple of weeks after starting treatment and has not yet returned, I am 5 months into treatment.
Not sure if this helps but just wanted to say what helped me. I hope you find a solution because I know how frustrating it can be.
Hi I had itching for years, before I was told I have PV,on asprin and venesection, also took fexofenadine for the itch which sometimes didn't work, I found out that when I ate foods with tomatoe in them I began to itch again. since I have stopped these foods the itching has gone and I also avoid strawberries and raspberrries. I have stopped the fexofenadine and as long as I have a cool shower i'm find, Give it a try . Regards Barbara.
Thanks so much for replying. It really helps hearing people's stories to build a picture of what might help. I know we are not all the same in how our body responds to the disease. Good to know about the Ruxoltinib.
From a fellow PV sufferer: For me it is temperature change that triggers the itches.
I get dressed in front of a small heater so I don’t get cold. I warm my clothes up before I put them on - unless the weather is exceptionally warm. I wear thermal leggings ( M&S) all year round. They look like regular leggings and I might roll them up In the summer.... if it’s a hot day.
I do take ‘fexafenadine’ an antihistamine ’ but I don’t find they help much. I’m also on Hydroxycarbamide and Rivaroxaban having had blood clots so I’m limited with what other meds I can take.
I bought a single electric blanket which goes across the foot of my double bed - keeping my legs warm if it’s a cold night.
And moving - that’s helpful - like going for a brisk walk.
Oh and I also have hot baths in the evenings and wrap myself like an Egyptian mummy in towels to get dry.
I’ve probably made myself sound really peculiar but this is what works for me.
Hi Boss1, hope you find a cure for the itchiness, mine is worse at night and have terrible night sweats. I itch during the day but not as severe. I plan on asking my oncologist next month if he has any suggestions. I have read that some people use Benadryl. Good luck with it! Ann
Hi, every sympathy. I use antihistamines, drink plenty of fluids and use tons of moisturiser. I find Aveeno or Olay works best for me. Kindest regards Aime.xx😺😺
Hi, The rule is to take cold showers to avoid itchiness.However like one other reader I have discovered that warm showers are what reduced itchiness for me. I get some slight itchiness 10 minutes after the shower ( I live in hot Thailand) but then I am fine. I have PV and take aspirin. Otherwise asymptomatic after 5 years.I agree that doing something like walking will help distraction and blood flow.
Soap I find is bad for skin flora! If I use any even if my shampoo gets on me
I have problems. I only bath 2x weekly otherwise I use wash cloth warm.I use organic cold pressed virgin coconut oil on my body daily. It is antibacterial so it’s great as deodorant! Water these days has chlorine and a lot of different minerals that can irritate in its self. If I use any soap I use castil soap to wash hands etc. Hope this helps!
I hope you’re able to find what works for you - it looks like everyone has so many suggestions!
Before Pegasys, my itching was seemingly random and constant. There were a few things that definitely set it off - temperature changes and abrasion. Even something light like brushing my leg against the blankets when getting in bed would do it. I knew those reasons, but I’d also often get itchy for no obvious reason.
My hemo at the time bumped me from one to two daily aspirin. Didn’t really do much though. She also prescribed betamethasone dipropionate, a steroid skin cream, and Atarax, an antihistamine. These together would usually bring it down to a tolerable level. I’d also tried the Zyrtec/Zantac combo, but it didn’t do anything for me.
Now that I’m on Pegasys, I almost never experience itching like I used to. When it does happen, a super hot bath (not a shower; they irritate my skin even more) and a pat dry always works.
The weird thing I experienced is that the BM/Atarax helped before Pegasys... but after I started it, if I got itchy, they did *nothing.* I’m not sure why these other things helped before but not now.
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Struggling to cope :(
Itching solutions PLEASE
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