pruritus.... It's driving me mad

[readie56]

Hi everyone

I seek some advice. The pruritus I have is increasingly bad especially at night.

I spent 4 hours last night literally clawing my skin.

This is what I do.

Cool shower.

Dove pure soap to wash myself.

Moisturiser twice a day or as needed.

All clothes and bedding washed in non bio.

Keep hydrated.

But... Every night I itch and itch and itch. The pruritus is getting worse for some reason.

Has anyone got any advice about controlling this please?

Best wishes

John

[VickySusan]

Hi John,

This sounds super irritating, especially when at night all you want is to sleep!

My dad had severe Pruritus upon diagnosis and was prescribed Colestyramine. His itchiness has decreased massively. He still gets itchy but it’s much much lower than it was. It’s prescribed for as and when he needs it, although he has it most nights.

Ask your doctor for their advice, they might be able to prescribe this, or something similar to ease the discomfort.

Good luck!

[readie56 in reply to VickySusan]

Thank you VS

I'll see the GP and ask for some. On second thoughts the local surgery is so overworked I'll get it from the hospital.

Best wishes

John

[Hidden]

Hi readie. You could also try pure potions skin salvation intensive moisturising ointment. You need everything you use to be non purfumed.

I've had excema and itchy skin isn't pleasant. I use elecon which is a steroid ointment on prescription only and must be used sparingly. Don't know if it would be suitable for your needs but may be worth asking about while you're at the hospital ?

L x

[readie56 in reply to Hidden]

Thanks Laura. I'll ask. I'm up the hos on Friday.

[Danisleigh]

My son suffered massively from birth until this year aged 16 when he had his transplant. He has alagille syndrome and this is associated with terrible pruritis and as a small child he would rip himself to shreds. We kept him cool, moisturised, cool showers...pretty much all you are doing really. He did take rifampicin and cholestyramine with limited effect.

[readie56 in reply to Danisleigh]

Thanks Danisleigh,

I'll ask about any other meds I could try on Friday.

Whatever is prescribed mustn't compromise my liver function. That knocks a load of options into touch....

Best wishes

John

[Hidden in reply to readie56]

That's correct that's why I would check about elocon. Good luck on friday. Hope you get it sorted

L x

[readie56 in reply to Hidden]

Thanks Laura.

It's 'drain day' on Friday. The period between drains are getting shorter.

I will ask and if there is a possible solution I'll let others know. Knowledge shared etc

Best wishes

John

[AyrshireK in reply to readie56]

Make sure your t/p team know of the increasing issue with pruritus, I know you are already listed and a rare blood group but we were always told that diuretic resitant ascites and quality of life affected pruritus would make you a higher priority.

Hope you get your call soon and all this will become a distant memory.

All the best, Katie

[readie56 in reply to AyrshireK]

Thank you Katie

I appreciate your post and good wishes.

I've informed the TP coordinator at Derriford and she has included my issues in the monthly report to Kings.

We live for the day that we can all enjoy health again.

I can't wait.

Best wishes

John

[Cobwebs]

I am allergic to Dove products so I use sea salt in my bath. Smother yourself in emulsifying ointment. Prescription or a couple of quid from a pharmacy. It is greasy but effective. E45 is the more expensive option! I tend to shower rather than bath and use stuff aimed at children.

[readie56 in reply to Cobwebs]

Hi cobwebs

Thanks. I'll try that.

I use E45 anti itch on prescription but it's soothing effects are limited.

This constant itch really spoils your day and I do try not to scratch but it's compulsive once you start....

Best wishes

John

[Cobwebs in reply to readie56]

The emulsifying stuff really is quite horrible and gets all over your clothes and bedding. But if you are anything like me it is constant washing because of the bleeding! I have a steroid cream too but I try not to overuse it. Mine is, strictly speaking, psoriasis but reading on here I think some of the itching is not linked to that. Certainly my liver is not a happy bunny.

Deb.

[readie56 in reply to Cobwebs]

Hi Deb

I have dry skin and,so I'm informed, the itch is down to my liver enzymes.

I'm spared bleeding so far.i just shed skin flakes which go everywhere.

This transplant will sort all my ailments out apparently.

Here's hoping

Best wishes

John

[Cobwebs]

Oh, I scratch till I bleed, especially at night, unless I pile cream on. The flakes are abundant here. I flake from head to toe. Seems to come and go of its own accord. Haven’t got a prognosis, or even a proper diagnosis, and failing to get an appointment with a consultant. I’m guessing no-one is too worried about me. Local hospital are normally really good. One appointment available on 22nd August when I will be abroad. Nothing else available!!

Deb 🙀

[readie56 in reply to Cobwebs]

That's not good enough.

You can ask (demand) a referral to hospital.

Failing use the A&E route and lay it on thick.

It all goes against the grsiny but needs must.

Best wishes

John

[Cobwebs in reply to readie56]

Hi, John,

Thank you for your reply. I could get referred to another hospital but I suffer from severe anxiety so I couldn’t get there on my own. My GP is on side with getting things done but it is out of her hands. I would look a bit silly turning up at A&E because my only symptoms are the itchy, flaky skin. Some dodgy blood tests but I simply cannot justify using resources.....

I suppose I am a little too laid back but if there was a serious problem, I would have an appointment, wouldn’t I?

Deb

[readie56 in reply to Cobwebs]

You would think so Deb.

Unfortunately,as I have found out over the years, quiet assertion in needed or just plain old going on and on and on is needed least they overlook you.

Best wishes

John

[Jjp80]

Hi,

I only use baby products now or paraben free products and goats milk soap is worth a try , it’s more an aftercare For the skin of you have been itching intensely.

The itching was getting ridiculous for me also and so I was prescribed hydroxyzine but I had to quickly point out that patients with cirrhosis must not take it. If you can see if they will prescribe you doublebase by dermal it’s relief in a bottle, they do one for the bath, shower and moisturising , it’s not the nicest stuff as you are coating yourself in a film almost but before bed on my legs is a must for me. You can get it online through chemists but it’s pricy , I only found out about it through a friend who’s son has severe MS and so gets bed sores and eczema , otherwise I doubt the doctors would even suggest it to me

[readie56 in reply to Jjp80]

Hi Jjp,

I'll look into your suggestions.

I have or had rather double base cream but it made me worse.

E45 anti itch cream is okish.

I'll try the goats milk.

Quite honestly I'll try anything at the moment as I'm damaging my skin itching.

The pigment has gone in patches on my shoulder and I've hard dry skin on my swollen ankles.

It's hard isn't it when the itch is caused inside the body.

Best wishes

John

[Jjp80 in reply to readie56]

Oh I hope you do find something , I was like that on the tops of my feet and hands . I think the problem is that’s everyones skin is different so whats works for another doesn’t always work for you, a lot of trial and error but stick with it!

All the best

Jude

[readie56 in reply to Jjp80]

Hi Jude

I'll keep plugging away trying different things.

Thanks for your suggestions. Much appreciated

Best wishes

John

[Couch1]

I greatly, greatly reduced the frequency and intensity by taking Alpha Lipoic Acid and (standardized) milk thistle. It's working wonders for me- health food stores usually have it. ( Avoiding potassium seems to help, too.) When I do itch (excessively) I apply pure tea tree oil to the area(s). Gold Bond lotion with colloidal oatmeal helps a lot after a shower. Vitamin B complex, among others, is also suggested.

[readie56 in reply to Couch1]

Thank you

Lots of suggestions for me to explore.

I've heard about milk thistle and it's benefits.

I'll order some of Amazon.

Best wishes

John

[mncold in reply to readie56]

Hi John,

One of my husband's doctors recommended Alpha Lipoic Acid for itching also. The doctor suggested 600 mg and I found a store that sells it in capsules of 600mg so he only has to take one capsule which he does after supper. It seems to have helped.

We also both use cornstarch [carefully due to its fineness] in areas of creases or around the waist.

Best wishes,

Mary

[readie56 in reply to mncold]

Thanks

I'll look into that Idea.

I'm trying menthol cream as it cools the skin... For a little while anyway

Best wishes

John

[Hidden]

Hi,

With regards to the above post mentioning the use of Milk thistle, The British Liver Trust does not recommend the use of homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and could potentially damage the liver.

More research needs to be done on the use and safety of such remedies and therapies.

If you are considering using complementary or alternative remedies &/or therapies always discuss this with your doctor.

Here is the link to our webpage on Complementary & Alternative Medicines;

britishlivertrust.org.uk/li...

Hopefully your medical team can help with this symptom,

Warm wishes

Trust1

[readie56 in reply to Hidden]

Thanks Trust1

I'm in hospital today so I'll ask the consultant.

Best wishes

John

[Hidden in reply to readie56]

Good luck with your appointments John.