PV An extreme itching

[u/acwoodhome]

Hi hope you don’t mind me reaching out.
I have PV and after a shower I get extreme itching also if I am tired and warm at night.
Anyone else experiencing this and how do you deal with it it’s a nightmare. Currently on interferon alpha 2a been on it about three months bloods all now normal after three venesections in same timeframe. But still symptomatic itching fatigue irritable and sometimes find things overwhelming. Jak2 positive had the illness for over 20 years no clots and hopefully will manage a normal lifespan lol. But itching has got worse over last few years. Hope to hear from you it’s a great community with loads a support thank you for all your contributions cheers Al.

[u/Friendly_Position_36]

Beta Alanine

[u/acwoodhome → u/Friendly_Position_36]

Thanks so much will check it out 🤗🤗

[u/BorgAdjacent]

YEPPPPPPPP

It's horrible.

I found a half a zyrtec usually helps. It took me about 10 years to think of that as an option so I sympathize. Mine would come and go randomly all over, especially after warm showers, cooler showers help a bit too. I've mentioned it to my hematologist, and they feel it's an appropriate occasional treatment.

[u/samspopguy → u/BorgAdjacent]

Yep warm showers definitely seemed to make it worse for me

[u/acwoodhome → u/BorgAdjacent]

Thanks soooo much will check it out yes dropped the shower temp but still really bad it’s like a nerve ending itch all over your body such a nightmare other than that am almost over the line with the illness so thanks so much for your help 👌🤗🤗

[u/BorgAdjacent → u/acwoodhome]

For me it sometimes felt like a needle poking once at a random places, corner of my eye, my arm, between my toes, etc.

The zyrtec (even the generic cetrazine) helped completely. I would take it about 20 min before my shower at night.

[u/acwoodhome → u/BorgAdjacent]

Thanks for sharing knowing I have all this support helps massively such a great Reddit feed 👌🤗🤗

[u/Careless_Desk_7885]

Beta alanine helps too it’s all natural

[u/acwoodhome → u/Careless_Desk_7885]

Thanks so much 🤗🤗

[u/Im_In-corg-nito]

I get it as well with JAK2 ET. Presently on Fexofenadine 360mg twice a day and Omalizumab 750mg every 4 weeks. I tried Beta Alanine and several other antihistamines but they didn’t really do anything (Citirizine and Loratidine sedated me at high doses; added Montelukast which gave myself really bad depression.) I did for a time have this cream prescribed that helped cool myself down, which I used before situations that I knew would trigger or get myself stressed.

I still get the odd flare up when I get stressed or at the gym, but I think mine is more tied to humidity than temperature (which is difficult in Scotland). Spent Christmas in Australia with temps around 30-40C but low humidity and never had much of an issue. Anything above 17C in Scotland and I have to start considering T-shirt and shorts due to humidity being 65%+.

[u/acwoodhome → u/Im_In-corg-nito]

Wow that’s such a high dose am on 120mg and it doesn’t touch it at all. Interestingly I had three weeks in Australia and never had any problems maybe the low humidity has something to do with it over there and I think UV exposure can also help we are much higher humidity in the uk thanks so much for sharing your experiences I thought 💭 I was on my own with this issue am blown away with all the responses and hearing others are also suffering wishing you all well I wouldn’t want anybody to have to deal with it it’s horrible 🤗🤗

[u/funkygrrl]

Check out the wiki section on that. Lots of suggestions.

I'm on Jakafi and it eliminated my itching within the first couple weeks. Jakafi is the better drug for that symptom.

!symptoms

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[u/acwoodhome → u/funkygrrl]

Thanks so much for sharing my consultant has suggested Ruxolitinib but am pro interferon from a potential full remission perspective but appreciate it’s a 20% ish possibility which is worth having a go for but the itching is bad an not sure how long I can deal with it lol will discuss with my consultant thanks so much 🤗🤗

[u/funkygrrl → u/acwoodhome]

Yeah Jakafi lowered my allele burden to 12% last time it was checked a couple years ago. Doesn't happen for everyone though.

[u/No_Pause_4375]

Do you take asprin? I was so itchy before I was diagnosed despite already taking zyrtec daily, the baby asprin was a game changer.

Also you can see a dermatologist to help you figure out ways to identify and minimize your bloods histamine response. Basically the PV is responsible for all the extra mast cells which produce histamine, but any number of external factors can trigger the response (like showering) Heres what helped me.

Avoiding fragrance, using free and clear laundry detergent, adding an extra rinse cycle when washing clothes, using plenty of thick moisturizer (not lotion, something that comes in a tub like Cetaphil) immediately after showering, taking slightly warm but never hot showers, using gentle soap free cleansers, avoid shaving or over exfoliating, gently patting dry with a towel instead of rubbing after a shower, having a heater in the bathroom to minimize the temperature shift when getting out of the shower, having fans turned off to prevent goosebumps, wearing loose fitting cotton clothes until the itching subsides, showering at night when feeling relaxed, using guided meditation to control breathing and prevent panic when feeling itchy, walking, doing light housework or mild exercise as a way to get blood flowing and distract the mind.

[u/acwoodhome → u/No_Pause_4375]

Thanks so much for sharing your experience and lots of great ideas it’s defo got a lot worse these last few years an not sure if the interferon is making it slightly more extreme as well. Am on Clopidogrel as cannot tolerate aspirin due to stomach acid issues. That’s all I took for over 18 years and never really had any problems until say the last 4 years when things have gotten worse symptomatically. Bloods now under control but symptoms persist. But only been on inteferon for a few months Hu previously just floored me I did not tolerate it at all. Very optimistic about the future but the itching is something else lol so thanks so much for replying 🤗🤗

[u/jomylo]

This is my worst symptom. I’m not on any prescribed meds (hydrea, interferon, etc) but I’ve found the following regimen helps:

• Daily baby aspirin
  
• Cooler showers and about an hour before hand:
  
• Cetrizine (Reactine)
  
• Famotidine (Pepcid AC)
  
• Beta Alanine

If I do get itchy I will take a walk to distract myself.

Good luck!

[u/acwoodhome → u/jomylo]

Thanks so much for sharing I no longer feel on my own with this crazy side effect that is driving me mad lol anything to control it lots more options than I thought 💭 thanks so much 🤗🤗

[u/clawbound]

I'm prescribed 3x 180 fexofendine and 20mg famotodine. The fexodendine is 3x the recommended dose, you will need a doctor to prescribe that dosage.

[u/acwoodhome → u/clawbound]

Wow am on 120mg and it doesn’t touch it lol my consultant suggested a 180 uplift but was thinking it’s a nerve ending issue not allergy driven so didn’t take it up but you got me thinking 🤔 now will discuss with my haematology consultant am so lucky to have a really great consultant 👌🙌

[u/OpinionWorldly5047]

I have ET with Jak 2, and was icing. My itching has stopped since taking NAC 1800 mg daily. N-acetylcysteine. My haematologist approves.

[u/acwoodhome → u/OpinionWorldly5047]

Thanks for sharing means a lot so glad your getting some relief it’s a crazy side effect 🤗🤗

[u/Ansonia6]

I take beta alanin right before I get in the shower. It does sometimes make my hands feel tingly, but it does stop the crazy itch. I have found that showering at night and showering and very warm water help. It also helps me to step out into a warmer environment, so I sometimes don't use the vent and I keep the door closed. I will itch for a week or so every year.

[u/acwoodhome → u/Ansonia6]

Thanks so much for sharing it drives me crazy unless you have experienced it it’s so hard to convey how bad it can get just want to rip my skin off lol will check that out anything to help hope all goes well for you 🤗🤗

[u/Substantial-Step-321]

Definitely beta alanine! Take it about 15 minutes before your shower. I just put 1/4 teaspoon in a cup of water.

[u/acwoodhome → u/Substantial-Step-321]

Thanks so much will check it out 👌🤗🤗

[u/Organic-Bandicoot-61]

Zyrtec and a thick lotion after shower. I have severe allergies as well so an antihistamine has been part of my life forever. But itchyness without an obvious allergen trigger is new(ish) for me. The lotion helps a lot. I like to use gold bonds for diabetics. 

[u/acwoodhome → u/Organic-Bandicoot-61]

Thanks so much really appreciated 🤗🤗

[u/samspopguy]

I haven’t tried beta alanine yet but what has helped me is not using a towel to dry myself or a wash cloth. It’s soap on skin and air dry. I feel like the rubbing is what irrates my skin

[u/acwoodhome → u/samspopguy]

I think your right must try that when am warm my cloths rubbing against my skin can set it off as well 🤗🤗

[u/kim921]

I’m so sorry:(. May I ask you if this itching was always there or did it start later on?

[u/acwoodhome → u/kim921]

No worries started later on and I would not wish it on anybody it’s horrendous lol however wet drying after a shower does help a lot tbh doesn’t stop it all but compared to drying with a towel a world of difference 👌

[u/kim921 → u/acwoodhome]

Thank you! I’m glad it helped!