Roller-coaster 🎒 : I think I have just... - British Liver Trust

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Roller-coaster 🎒

jojokarak profile image
jojokarak
β€’42 Replies

I think I have just experienced the worst 24 hours of itching in my life, I am red raw, sore, very tired and feeling sorry for myself which I hope everyone realises I don't do very often.... And I am definitely putting down to the increase of my advagraf as it begins a few hours after I take them, keeps me up all night and then calms down just before my next lot are due. I actually rang the ward at Leeds last night I was that bad, I had antihistamines, calamine lotion and several showers nothing worked. I was told by Leeds to get a prescription for questran powder so I have everything crossed that it will work for me today and tonight otherwise I going to stuff myself in my fridge lol

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jojokarak
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42 Replies
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Jahida profile image
Jahida

Sounds horrible. Wishing you a quick recovery from all this pain. You've got the right things though to stop it x

sheri44 profile image
sheri44

so sorry. I struggled with itching as i said before. I was eating antihistamines like sweets. I hope it eases for you. I blame the sausage πŸ˜‰ xx

jojokarak profile image
jojokarak in reply to sheri44

Hahaha I do now lol 😁

LAJ123 profile image
LAJ123

Really sorry you're going through such a bad time recently. Hoping that it wont be long before you get back to where you wish to be.

Keep strong.

Jim and Lucy

Millie09 profile image
Millie09

Oh poo πŸ™„. Well jojo, I can relate to the itching as it's doing my head in now. I must tell my dr , I don't sleep well as it is but even less now πŸ™‚.hope the powder works for you hun. I'm going to do a naked dance around the garden after dark if it keeps on 😁xx

jojokarak profile image
jojokarak in reply to Millie09

Might have to join you hunni x you not on questran powder?

Millie09 profile image
Millie09 in reply to jojokarak

No jo, I have not been given anything πŸ€”.lactulose yes , but nothing for the itching. I don't have a hospital appt until 8 th June so ill have to see my own GP to see if he can help xx

jojokarak profile image
jojokarak in reply to Millie09

Gp should definitely be able to prescribe it as I got it off an emergency doctor this morning x

Millie09 profile image
Millie09 in reply to jojokarak

Oh that's good news ! Thanks hun xx I'll be on the case In the morning xx hope you sleep better tonight 🀞x

Identity75 profile image
Identity75

OK this is a little know but well established cure. Take one bath tub. Fill to the brim with Haribo. Climb in and have a wriggle.

The itching will be cured by the Haribo softness without causing sores. You'll be happy at the kaleidoscopic colours. And you won't have to get out for a snack.

Job done.

I'm off for a bath πŸ›€πŸΌ

Millie09 profile image
Millie09 in reply to Identity75

Hahaha!!! πŸ˜‚πŸ˜‚πŸ˜‚

jojokarak profile image
jojokarak in reply to Identity75

Oh you do crack me up hahaha x

sheri44 profile image
sheri44 in reply to Identity75

Haribos cure everything? πŸ˜‚πŸ˜‚

jojokarak profile image
jojokarak in reply to sheri44

They do for identity lol laughter my cure and taking the piss x

AlFinio profile image
AlFinio in reply to Identity75

πŸ˜‚πŸ˜‚πŸ˜‚Loving it😍😍😍

peteingloster profile image
peteingloster in reply to Identity75

Me to Yaaaaaaay,and smell sooo nice!

Cookimonster profile image
Cookimonster

Sorry Jo, don't know what to suggest, just hope you feel better soon

jojokarak profile image
jojokarak in reply to Cookimonster

Thanks anyway x

sheri44 profile image
sheri44

every answer to every question is now haribos. Name change of group defo needed πŸ˜‚

molly829 profile image
molly829

Hiya sorry ,I know what you are going through,try milk thistle, another,is the antiseptic hand wash I use to rub it on my skin,stings but gives you a bit of relief warm baths also help ,I spent hours in my bath even fell asleep a few times, I also had a tablet of my doctor , I will try get the name for you talcn podwer,in bed before you get in bath, moisturize,then into talc bed , hope it helps

Identity75 profile image
Identity75 in reply to molly829

I'm just picturing Ross from FRIENDS trying to put on his leather trousers. Lol

peteingloster profile image
peteingloster in reply to Identity75

Me to absolutely brilliant

fizzix50 profile image
fizzix50

E45 itch relief cream works for 'im indoors - worth a try :)

Shanbury profile image
Shanbury in reply to fizzix50

Hello there - my nickname is Celeste. I'm new here- no "official" diagnosis yet, bur I have most all symptoms save ascites. The pruritus (severe itching) is sure here now. I'm forcing myself not to scratch. I'm a veteran of all-over poison oak, so I know that leads to disaster. Please tell me more about E45 itch relief cream??? Thank you so much!

fizzix50 profile image
fizzix50 in reply to Shanbury

You can get it at any pharmacy - presumably you are in the UK? It isn't cheap but it really does work, and quite quickly too..... here is a link to it on amazon: amazon.co.uk/E45-Itch-Relie...

Rapid relief from the itch of eczema

Dermatologically tested

Treats and soothes problem, dry skin conditions

Dermatologically tested, allergy screened and perfume free

Him indoors also uses the E45 shower gel and shampoo, and finds that really good too. Again, not cheap, but who cares if it works and helps!

Sorry to hear you have all the symptoms - not a doc - obviously - but it does sound very similar, so keeping everything crossed for you that it isn't the case. Good luck with the itch!

x

Shanbury profile image
Shanbury in reply to fizzix50

Rats. I'm in Las Vegas, and you know what that means. Thank God at least this is a Blue State. I'm so ashamed to be an American. More than likely this does not exist for me here. I've lived in Beautiful British Columbia for quite a while and I became well acquainted with what was not available in the U.S.

Pray for us. Between this nightmare of "fighting for the Soul of our Democracy", and this illness...an old friend put it very well. "Being Senior is not for the faint of heart". Cannot believe I have 70 yrs on this material plane. I know I never made it past 19 and The Beatles.

After Hard Day's Night even my older friends at the coffee house figured out they were "cool". I was just 17. You know what I mean, haha. John and George. Now definitely George. Got to see a great "never seen" TV interview a few years before he returned to the Universe. I loved him singing "If you don't know where you're going any road will get you there".

also myriad other severe physical issues...it's taking all my considerable will to keep this side of insanity, Well, I'm certain I'm not the only "Train Wreck" as my first MD in externship used to say about some patients. And that's an undisclosed "medical term". Thanks 'tho.

I'm a closet Anglophile. Downton Abbey, Doc Martin... et al. Have some English/Irish Ancestry. Would love to see some "Last Of The Summer Wine" scenery- if it's still there. Take care, and I would love to be a listener. This site will save me as I'm stuck living/staying? with my Daughter since last August and it's freaking us both out. What am I doing here after working so hard not to end up a bag lady... Thanks again, for putting up with the ravings of an "Old Hippy, just tryin' real hard to adjust"... I'll get my sea-legs on this site quickly I hope. Just staving off panic and pain with my newly acquired CBD pen and a low dose of Gabapentin (Neurontin) after disastrous encounter with Tramadol. Do not ever take that! Nightmare- I had no idea, and I know some pharmacology from a sadly missed medical career.

Well, I managed to ramble on... my prayers are with all, and will be proud to be a strong shoulder for all of you. I do that much better than for me. Guess we're all just too human. God Bless, and Peace Out for now.

fizzix50 profile image
fizzix50 in reply to Shanbury

not sure if you can order from the us amazon? good to have you with us you old hippy!!! 70 years is pretty cool well done for getting that far! Everyone has their demons and this group is brilliantly supportive irrespective of the cause of their illness. OH is an alcoholic who won't/can't stop drinking and have had nothing but love and compassion from these guys. Have a great day. Feeling sad as have just heard about the bombing here (Manchester). Makes you realise you have to be thankful for waking up each day and still being here, whatever problems you face....

Shanbury profile image
Shanbury in reply to fizzix50

Yes- I had to stop writing as I keep MSNBC on much of the day because the maniac causes crises by the hour- minute, can't keep up- and saw the horrible news about Manchester. I am broken- hearted to be looking at the latter part of life at the too possible end of the world-for real.

I was doing really well at finally ending drinking after 17yrs mourning my Son... that's another story. Then this Monster appears and I will not say his name. But I was raised by WWII Naval Officer Dad and soaked up his WWII Encycopedia-shouldn't have looked at the Holocaust. Way too young, 8-9yrs old- no, you cannot psychologically "unsee" something. Haunted my whole life. To see and hear every word and deed out of the Fascism Handbook is so monstrous I am thunderstruck with terror.

The incredibly stupid and violent hate mongers are screaming with banshee delight- and they are heavily armed. Those of us who are aware of ACTUAL REALITY are horror struck. We are too close to losing this but "failure is not an option". Heroes like Maxine Waters are loaded for bear. I just pray I live to see the Monster start foaming at the mouth on live TV and be carted away. Even scarier, I checked out the entire line of succession and there is not one Republican fit to serve. Paul Ryan? Mickey Mouse's evil twin.. How can it be a "Christian"'s lifelong dream to take food and shelter away from those working to death but still not able to afford pretty much anything. I've been "working poor". I had food stamps given to me a long time ago. I was working full-time but didn't make a lot! I was so mortified I only used them once. I was single and childless so I would rather starve than be humiliated at the store.

Anyway, Suffice it to say, with each horror out of this Monster's mouth, and are you kidding me Clinton? I knew as soon as she had the nomination we were destroyed. So let's have another cup of coffee, and why not pour another Capt. Morgan. Those who are about to die salute you. Didn't want to live for so long. and here I am. Got my wish now that I've changed my mind. Right after a miraculous clean bill of health before the election cycle. Dear God... and look at our young, can't even go to a concert. Yes, my heart is breaking tonight. I pray to live long enough to see the world saved even though we've already fallen off the precipice. Can we just do a Looney Tunes stop before we hit the dirt?

Oh God, thank you for this page and kind people. I promise to be a good and kind friend to all. "I know too much to argue or to judge"... Bob Dylan... yeah, I was there for the beginning.

God Bless my Dear Britain. I do love it so, and as I have some English Ancestry, and have a great affinity for Jane Eyre...Beatrix Potter... oh my, I have gone on for days, 'til tomorrow friends. You may correctly surmise I have had no human to talk to about any of these things for too long. So there are no superlatives too great for my gratefulness for this page.

Happy trails...

Dldtx profile image
Dldtx

I hate that I use Atarax (hydroxyzine) sometimes it helps sometimes it's a pound of cream , I was laughing when dermatologist said I'll give you 5 pounds of cream , hope you get better and get to rest πŸ‘‚

Hi

My Dr prescribed fexofenadine 180 mg tablet, works for me. Hope you feel better soon . Lots of love Lynne xxxx

Morning all. My hepatologist keeps reminding me to be careful as some over counter meds filter through liver giving me false blood readings.. so i did me own research..

Sanex shower gel

Dermol 500 lotion. I get on prescription

Aveeno lotion. Keep eye out for offers then stock up

Wash all clothes bedding towels etc in non-bio washing liquid. Bio stuff got enzymes which known to irritate skin. Use liquid not gel or powder as these dont necessarily break down in machine.

Use non smelly fabric conditioner . Boring but smelly ones got enzymes.

Hope this helps and yeah I do occasionally take antihistamine!!

dizzime profile image
dizzime

Hi there jojo. I know you have had a lot of replies but when my itching was really bad i used 'Lanacane medicated body powder' you can get it ftom most chemists and it really helped me. I hope this helps and if not go back to the Haribos lol. Good luck, stay srong and keep positive. Xx😊😊

jojokarak profile image
jojokarak in reply to dizzime

Thank you and luckily for me it has calmed right down I think it was increase in medication what caused it x

dizzime profile image
dizzime in reply to jojokarak

That's good i hope everything goes well for you now. Xx😊

jojokarak profile image
jojokarak in reply to dizzime

Just waiting for a call now to see if my blood's are improving. Hope your well x

dizzime profile image
dizzime in reply to jojokarak

Yep doing fine now cheers. Because of the extra steroids you have been given keep an eye on your sugar levels. If you feel tired a lot or going for a wee more than usual get your sugars checked. After i rejected and had been given loads of pred about 6 weeks after my blood sugars went off the wall, very high and i ended up with steroid induced diabetes. I dont want to worry you but just keep and eye on things. Fingers crossed you wont. Stay strong xx ❀😊

peteingloster profile image
peteingloster

Hi Jojo, am 7weeks post Liver TP, all going really well, but have started itching again, same as pre-TP, did you recover from your itching, what did you use ? Please it's driving me crazy, worst at night!Aaaargh

jojokarak profile image
jojokarak in reply to peteingloster

Hiya it did ease completely my consultant recommend aveno it's an oat based body wash and cream also if you go to your GP he can prescribe you questran powder or your consultant can at hospital which one are you under ? And congratulations x

peteingloster profile image
peteingloster in reply to jojokarak

Excellent got Aveeno [both cream and wash] virtually all the itching has gone, soooo good

jojokarak profile image
jojokarak in reply to peteingloster

So pleased for you brilliant news πŸ˜€x

peteingloster profile image
peteingloster

Thank you so much, for the congrats and the info, this site and peeps like you have been such a boon and social support , when you might be struggling emotionally etc I always know there's a friendly , non judgemental post I can find on this "blog"not sure if thats the right description but it'll do, lovely to hear from you again will "speak" again

peteingloster profile image
peteingloster

Oh forgot about the hospital you asked about, it's QEH at Birmingham, and they've been amazing, bless our NHS and all who sail in her!!!!!!!!!!!!!!!!!

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