Itching-duloxetine : HI ... has anyone used... - MPN Voice

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Itching-duloxetine

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HI ... has anyone used duloxetine for severe PV itching??? If so, what was your experience??

Thanks everyone!!

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14 Replies
finlay2106 profile image
finlay2106

Hi Keiks,

I see that Duloxetine is an anti-depressant that can also be used to treat neuropathic pain. My understanding regarding the itching is that it is caused by mast cells releasing histamines (like an allergic reaction). I have PV and was having problems with itching, sometimes when skin in contact with water and other times (mostly the evening) like an itchy skin attack which stopped me from sleeping. The article in pvreporter.com on suggestions for combatting the itchies doesn't appear to list Duloxetine and I think that previously a combination of anti-histamine and Ranitidine (Zantac) worked but I think Zantac is not available in the US now. I was using Cetirizine and paracetamol to try to calm things down. I also prefer to use a method that doesn't involve use of medication.

A rather weird approach I've found that works for me is to have a cold shower either every day or every other day, using a soap that doesn't cause any reactions (you have to experiment). This is based on the ideas of Wim Hof ('The Ice Man') and he suggests you build up to it by having a 'normal' shower (in our case luke-warm) and then turn the temp. control to cold and do just 15 seconds, second week go for 30 secs. and build up to 2 minutes. I found that when I started doing this the itchy skin problem stopped immediately with just some tingling/slight itchiness for about 15 minutes after the shower. His view is that it affects the immune system response in a beneficial way and it certainly works for me after trying creams, soaps, medications. For some months now I haven't bothered with the tepid shower, I just go for it cold from the start which is a bit of a struggle now it's winter and get it over with quickly. I do long for a long hot soak in the bath but I think those days are over! I'm also on Hydroxycarbamide which didn't appear to help in any way with the itchies.

I know this sounds rather daft but there was a TV program recently in the UK that recommended a 30 second cold shower to benefit the immune system and my understanding is that mast cells are all part of the immune system response. I will probably get a reputation for being a bit 'off the wall' with this but I keep raising it whenever anyone posts here about itchy skin and PV.

Good luck if you try it.

Paul

in reply to finlay2106

Wim Hof is a legend. It doesn't work for everyone but I know lots of people who follow his method and I know some people that teach it etc. I also use a antihistamine 25mg hydroxyine hydrochloride which works for me and stumbled on it purely by chance by a doctor who was treating me for something completely unrelated. Thank goodness for that doctor she changed my life!

in reply to finlay2106

Hi Paul... Not “off the wall” at all !!!! I’ve tried the cold shower then the really hot shower and the warm/cold... but it changes. I may try the cold and I’ll be good then next time I do cold I’ll scream from itching afterwards, so nothing ever sticks!!!! 😢. I took the duloxetine one night and suffered with intense nausea and heavy head the next day.... stopped that ......I just don’t want to do the antidepressants!

I have used a prescription antihistamine (Rupall) and I’ve tried Benadryl and creams and beta alanine and phototherapy ... nothing works.. actually putting on cream will just set off an hour or two of suffering and just getting dressed will set off a screaming bout of what I describe as itching/pinching/burning !!! I’m going to try the cetirizine and Zantac actually, I really hope it works!!!! I’m in Canada so I can get Zantac but Cetirizine is impossible to get in Canada so I ordered it from Amazon (came in from the U.S.).

Thanks so much for you input !!!

Be safe!

finlay2106 profile image
finlay2106

Forgot to mention - good idea to check/keep a diary if you haven't already done so for any pattern to the itching that could be caused by certain foodstuffs or other substances. Sadly for me chocolate and salty crisps seemed to aggravate things so I keep those to a low level. Again the article in pvreporter talks about this but it seems to be very personal and everyone reacts differently.

Paul

JP1952 profile image
JP1952

Hi Keiks,So interesting to read Paul's reply. I also suffer from PV related itches and would love to try the ice cold shower treatment but haven't got the nerve. Bizarrely what works with me is a hot shower, and cool down slowly, then apply an oil based lotion which I also use as a soap. Medication wise I take one fexofenadine every morning half an hour before getting out of bed, and sometimes another in the evening.

Hope you find something that suits you. The

Itch can be hell.

in reply to JP1952

download the Wim Hof app an you can build up slowly doing the challenge it's really good I should do it again. I also used to do the breathing exercise to give me more energy and push oxygen around my body!

in reply to JP1952

Hi JP1952...as I mentioned to Paul, I’ve tried different water temperatures and it doesn’t always work. What is fexofenadine? I’m going to research it.... and does it help with the itching???? I’m constantly looking for something that will help.

Hearingu profile image
Hearingu in reply to

Fexafenedine is anti histamine . Works for me ! I use oiliatum in the bath too . Have pv . Tried other anti his but this one suits me . Been on peg interferon for two years . Bloods are at normal level now . Cut dose for peg to 45mg every three weeks and fexafenedine to one a day . Feel good Hope this helps . Take care 😊

JP1952 profile image
JP1952 in reply to

Hi Keiks,As Hearingu said fexofenadine is a antihistamine prescribed to me by the pharmacist attached to our surgery. I am in Wales in the UK. This is the third one I tried and at the same time at my request he prescribed me hydramol which is an oil based moisturizer. Around about the same time I started following to the best of my ability an anti inflammatory diet which is more or less a Mediterranean diet having watched some utube talks by Angela Fleischman.

I have been battling the itch since 2015 but diagnosed with ET in 2019, diagnosis changed to PV later in same year. At this point in time it is being managed the best since it started so I'm doing something right. It can be a faff sometimes but I felt I was going mad sometimes because I could get no respite from it, so I'll do whatever it takes. My information and advice have all started on this wonderful site, I am so grateful for the site and everybody's support.

Hope you find what helps you really soon.

Jeanne

JP1952 profile image
JP1952 in reply to JP1952

Forgot to say because I notice you also seem to be sensitive to temperature that I try to keep the house the same temperature, and because a change of clothes can trigger the itch I warm them on the radiator first. Showers are best after a run or vigorous walk.

in reply to JP1952

Yes I do try to keep the house temperature the same... a bit tricky sometimes and what a great idea about warming the clothes before dressing... I will try it. Thanks!

in reply to JP1952

Thankyou so much for this helpful information.... I will try everything possible outside of antidepressants. Thanks again Jeanne. Be safe!

I haven't heard of that but I take hydroxyzine Hydrocloride 25mg however, my itching is more at night rather than when I shower etc, so I know we are all different but this is an antihistamine and that I learnt is why we get pruritus, and some people look at avoiding high histamine foods too!

hunter5582 profile image
hunter5582

One of the meds that is recommended for PV itching (pruritis) is ruxolitinib. As a JAK-inhibitor it treats the underlying cause of the problem. Not sure if you want to go there yet, but it is an option. If you are in the USA, it is the only med actually FDA approved for PV.

I have used Eucrisa as a topical for eczema. It works great! I asked my dermatologist and she said it works for pruritis as well. Not sure if that would work for you, but it might help control the outbreaks.

Hope you find a solution soon.

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