stinging itch

[S031251]

I have been free of the stinging itch for nearly 4 years thanks to ruxolitinib but has all of a sudden returned and I wondered if the same has happened anyone else?

[JP1952]

Oh no. I am so sorry the itching has started again. I have been free of it for one year thanks to Ruxolitnib, but the burning sensation in my legs has never gone and I am in dread that the full blown itch will return. I think I read somewhere that other patients experienced a recurrence .

[ainslie]

I find that my itch varies, sometimes almost gone but can have flare ups, it may be temporary or you may need slight increase in Rux, I am on 20mg+17.5 but if itch increased I would add a quarter of a 5mg tablet, that’s not advice, it’s just my plan. I have PV

[Chicagopv]

Try Atarax aka hydroxyzine. You need an Rx for it, at least in the US. Or benadryl, which is over the counter here.

[william-Indo in reply to Chicagopv]

Just take Zyrtex 1mg (otc), It is good and cheap 🙏

[PhysAssist in reply to william-Indo]

Also Famotidine/Pepcid 20 mg twice daily [BID] along with whichever selective H1 Blocker [antihistamine] you favor [Zyrtec/cetirizine, Claritin/Loratadine, Allegra/fexofenadine, or the newer ones, though they seem to be more expensive and about keeping a brand name instead of improving symptom control].

[Ettiel]

Like you I was diagnosed with PV in 2015 after a long period with stinging itch. I was treated with aspirin and phlebotomies originally, then Hydroxurea which didn’t work too well for me I wasn’t given Ruxolitinib until 2019 when I progressed to MF. It totally banished the itch and apart from considerable fatigue I’ve been fine until some months ago when I developed a burning sensation and pain in the soles of my feet but no return of the stinging itch - as yet. That is very discouraging for you and I dread the itch returning - would prefer the burning! 🥴 You may well get rid of it by increasing your dose of Ruxo. Fingers crossed for you!Ettiel 👍🌻

[Sewingtime]

Hi, so sorry to hear this, I can sympathize! I had been itch-free since October when I moved off hydroxurea to ruxolitinib, and it was a wonder drug. No itching after two or three days, my life was transformed... until last month, when my blood tests showed my RBC, hemoglobin and hematocrit were all well below normal so my hematologist told me to stop ruxolitinib until we could get my levels back up. Within a week my burning itch was back, and it is still here a month later, although I have been gradually upping my rux dose again, almost back to where I was but I am still itching. I don't think it is as bad as before I started ruxolitinib last fall, but having been itch-free for some many months, it is so demoralizing. I have tried antihistamines, but they don't seem to help me. I might ask about the prescription one mentioned above. Just hoping that gradually with the build up of rux in my system again, it might eventually go away. Sounds like there was no trigger like this for the return of your stinging itch. Any chance of upping your rux dose a little, can you talk to your doc about trying that to see if it might work?

[spartacus1952]

So this itching business....thank god you folks understand cause no one else does.

I have 4 fold treatment.

1. Antihistamine which my doctor prescribed BLEXTEN 20 mg, 2. B12 - 1000 mg /day, and

3. Magnesium Glycinate 800 - 1000 mg / day - helps muscles relax and helps w/sleep.

4. Aveeno or Gold Bond Eczema Care Cream - dry skin will increase itch intensity

Does not put you to sleep but better quality sleep and aids against cramping. I think we are all so different and this disease seems to affect everyone differently, so it's cool to see what other people are doing and someone's remedy may just help you. Blessings to all of you suffering with this insidious disorder.

[PhysAssist in reply to spartacus1952]

Hi again,

I think it bears mentioning that [medically-speaking] daily showering, or even doing so weekly is not necessary for adequate hygiene.

Viable substitutes include- washing the bad places with soap, water and a washcloth [i.e., sponge bathing], using skin cleansing wipes, and/or ethanol-based hand sanitizer on a wash cloth, and saving showering or bathing for washing all-over for the exception of being physically soiled with dirt, dust, or other substances.

See:

metrolinadermatology.com/ch...

wexnermedical.osu.edu/blog/....

I started my skin cleansing routine, because of medical necessity, when I was unable to shower for a couple of months due to complications after surgery- prior to that I always showered at least once a day, and sometimes 2-3 times daily.

When I tried to return to my previous routine, I found that my skin stinging and itching [what I now know is aquagenic pruritus] had gotten so bad as to be intolerable [and still is despite my treatment w/ HU].