this has been suggested by the clinic nurse as not finding anti histamines to be helpful. My husband (Jak 2 pos, pv) has been tolerating Pegasys 45 mcg really well. Feels better than he had in ages. However after three weeks, he has become quite itchy (manageable during day) but it is waking him at night.
if he takes the beta al before bed, is it long lasting or would it be better to take when he wakes. Any other tips for night waking appreciated.
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Scaredalone
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I got onto beta alanine for itching after water exposure (though am also on peg nowadays). I found I had to experiment with how much ba worked and suspect your hubby might need to go though so experiments of his own. I landed on a third of a scoop (about 1g) morning and night. The side effect of tingling is an issue for some folk. I get it but it's not particularly unpleasant and lasts only about half an hour.
Beta alanine is widely used by folk with acquagenic pruritis (water itchiness) and there's lots of discussion of dosage on the Facebook group for AP.
You can ask your specialist if a low dose of Jakafi (5mg-2x daily) would be ok. My MPN specialist put me on it after my itching became intolerable. I can say with satisfaction that the itching has subsided tremendously, nearly 80% gone. I take Besremi(75mcg) and there has been no problems adding Jakafi. I tried other antihistamines with no improvement, so this has worked "wonders!"
As well as advice given by others I’ve found my skin is much more manageable if I stick to a v small number of gentle cleaning products (Child’s Farm for me and Surcare non bio for my clothes) and keep my skin covered in light natural fibres (mainly cotton) if it’s itchy. Hydromol Intensive with Urea made a big difference - there are supply issues so now I use hydromol ointment on my arms after bath/shower.
Dermatology advised the approach years ago when I was really struggling with aquagenic pruritis (I was desperate - used to apply ice packs packs wrapped in muslin for up to an hour after bathing!). I didn’t know then why it was happening but likely my first mpn symptom; platelets started to rise around then. Dermatology patch tested, found nothing and concluded it was just that my skin had become super dry and hypersensitive to everything - over time their advice helped as long as I was v consistent.
It could be that transdermal hrt has also helped my skin but that’s not much use to your husband
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