Itching - what PSCers say

“My itching is very severe also, I do scratch and at the moment my legs, feet and hands have cuts because I scratch so much (I even wake up at night already scratching) I actually find that a hot bath helps (even though it stings like hell when I first get in lol)”

“The only thing that really keeps my itching under control is phototherapy (sunbeds at the hospital) or exposure to the sun. If I get a bad episode at night, then the only thing to help is a hot bath. After around 10yrs of itching I have learned not to scratch like a maniac anymore but to just 'stroke' my skin so that it doesn’t stimulate more itching. I also find that wearing long sleeves and trousers stops my skin from getting chilly which will bring on my itching. I also find that there are different itch sensations too - a stinging one, another that is like being poked with a needle, and a burning itch. I pray for the day that I no longer itch and can live a 'normal' life!”

“My daughter finds sleeping in wet socks helps the itching. We tried wet towels but they slipped off. Then I thought about children with eczema who are wet wrapped and in desperation for some sleep she tried the wet socks. And they work!”

Letter to Ivor in March 2008:

“Dear Ivor

I hope that you are keeping well? As promised, I am writing to update you on my progress with the Photo-Therapy treatment I have been receiving at my local hospital to help ease my itching. As you are aware, I have been suffering with pruritus for some time now, and, after receiving my diagnosis 2 years ago [doesn‘t time fly!!!], I have tried many medications including menthol aqueous cream, Questran, Rifampicin, Naltrexone and Amitryptilene. I have had some relief with a combination of Naltrexone [ranging from 100mg- 250mg per day] and 25-50mg per day Amitryptilene depending on the severity of the itch; but although the itching improved, the side effects of the tablets meant that I was at best irritable and at worst, homicidal[!]. After going on holiday last year, I found that my itching disappeared after a few days sun-bathing [the relief also lasted for 3 weeks after my return] so I mentioned this to my consultant at the JR – she immediately suggested I be referred to a Dermatologist for lighttherapy. I have now been having ‘sun-beds‘ 3 times a week since mid-January, and have found that after treatment, I was able to start to reduce my medication. I have now had 16 treatments and have been able to stop taking all of my ‘itching‘ medication. I now feel back to my old self, am much happier and definitely less irritable – for which I am eternally grateful – my husband and family are particularly pleased to have their more even-tempered wife/mum back again. It is so nice not to have to take so much medication anymore, and even though there are risks attached to light therapy [i.e. skin cancer], I would rather take sunbeds than the huge amounts of chemicals contained in the tablets.

Please feel free to publish this in your next newsletter, as I am more than happy to share this with anyone who also suffers from pruritus – which can have such a negative impact on our quality of life.

Take care and kind regards

Kym

PS It is worth mentioning however, that the light-therapy at the hospital has a narrower spectrum of light than the rays at commercial high street tanning salons and is therefore deemed safer – it is not recommended that anyone should start to self-treat by visiting such salons as they are unregulated and could cause lasting skin damage.”