Pruritus

[Kelly2]

Hi all, do any of you have itching even when dry? Not only after a shower? It is very disturbing and lasts much longer! If so have you noticed if certain foods trigger it? I must start keeping a record. Also how many days before a tooth extraction do we stop aspirin?

Thank you

[hunter5582]

Pruritus can have multiple causes. For folks with PV - aquagenic pruritus is most common., but not the only one. Remember that it is actually the sudden temperature change that is the issue, not the water per se. If you are JAK2+ it is possible that you may have another inflammatory form of skin itchiness. I get eczema, which can be quite maddening. Yiou can also have skin sensitivities not related to the MPN. The one thng I have found that works for both eczema and pruritus is a medication called Eucrisa. My dermatologist prescribed it for the eczema - but it works for both.

[S031251 in reply to hunter5582]

Think we have the same cat 🐱!

[Osteomyelio]

Substance P can precipitate pruritus.

[Kelly2 in reply to Osteomyelio]

Hi, could you please explain what is substance P? even at this moment whilst I am dry I feel the needles we usually feel after a shower. Two days now and I will take an antihistamine right now. Yesterday I ate blue danish cheese. I am taking a record of what I eat from now on. I am PV Jak2+

[francesb]

I was told to stop aspirin one week before a procedure but would be wise to check with your consultant or specialist nurse. Best wishes.

[Kelly2 in reply to francesb]

Something like that. I will ask. Thank you!

[S031251]

Hi Kelly I have PV Jack+ - for years suffered horrible itching - any temp change/shower etc any time of day. I tried all sorts of creams diets etc nothing worked. Was put on Ruxolitinib 9 months ago and it has gone / I’m so grateful to receive it and appreciate that not everyone can. I do hope you find relief soon.

Anna

[skipperL]

I itched for years, day and night, but once I was put on Ruxolitinib it all vanished. What a relief! Most people with MPNs get pruritus - it’s part and parcel of the illness - diet, creams etc. have no effect. Love SkipperL

[Kelly2 in reply to skipperL]

It is strange but I did not have pruritus when I was first diagnosed. I felt it 8 years later after a shower and after a bad cold where I was taking a soluble aspirin 500 mg. everyday for nearly 10 days. Ι attributed it to the aspirin then as I had no idea what it was 😢

[Mazcd Partner MPNVoice]

Hi Kelly, you need to check with your haematologist or nurse specialist regarding the aspirin. Maz

[Kelly2 in reply to Mazcd]

Yes I plan to. Thank you

[JackLina]

Hi. I have managed to control this infuriating reaction by stopping certain food intake e.g. Orange juice, raspberries, strawberries etc. Also, low dose anti-histamine prior to bathing will ensure you don't suffer. The problem comes from within (histamines) and cannot be eradicated by the use of local creams. Hope this works for you.

[Kelly2 in reply to JackLina]

Hi, I know. I tried taking antihistamine before showering last time and was sure I discovered the solution to my problem but unfortunately didn't work at all! I still had the itching. For me that I loved showering all the time this has lowered the quality of my life.

[JackLina in reply to Kelly2]

I use chlorphenamine 4mg and always have a long soak in the bath with Oilatum bath formula (Boots £8.99). It is fantastic. I put double the amount it says in the bath water. I know what you are suffering because I stopped bathing altogether for a long time. I became phobic about baths and showers. I discovered preservatives such as sulphites are also an irritant and as much as possible avoid processed foods. I hope you find some calm soon. All the best. x

[JSKly]

I had pruritis more and less over many years. For the last couple of years I’ve started having eczema. Sometimes very bad sometimes not so. It seems related to ultra dry skin. And it too can be set off by change of temperature. I’m nearly 83 and never had allergies as such.

Too many tomatoes set me off once.

[Kelly2 in reply to JSKly]

Hi, I have found that taking antihistamine with Lexotanil works temporarily. I remember someone else also mentioned that.

[JSKly in reply to Kelly2]

I was given three different antihistamines but none worked.

[EleanorPV]

My life saver. I found beta Alanine which is an amino acid which body builders use. Please research and ask your specialist before trying. I’m happy for pm.

[Stella57]

Hi, I have had aquagenic pruritis then cut out all washing /shampoo products with parabens, silicone, perfume and the dubious "Made in China" mark. Then body lotion, face creams etc. with any of the same. Out with all of it. Then I lowered the water temp in the shower by as much as I can be comfortable with.

It is a matter of elimination and I am hesitant to recommend anything but I have found moderate success with a soap free, skin care product branded SebaMed. Manufactured in Germany, I found it in the U.K. in high street shop Savers. It claims to adjust the skin's pH by a couple of points bringing the alkali down from neutral 7.2 to 5.5. The blurb claims healthy skin is slightly acid and soap makes it much more alkaline. More numbers to contend with, but its all science and mathematics, weights and balances at the end of the day.

All the best, because the itch is hellish.

[lucieboo]

Yes, I take half Atarax at night, it is not the same itching as after a shower, but I can't sleep, the Atarax does the job. Eczema also, on my face, dry and itchy even with creams, I will try Eucrisa, I already use Uriage which is pretty good, and very little shower oil, rather than gel.