Milk thistle question

[Shazzamattaz]

Hi, I was diagnosed in Dec 2012 after I had a liver biopsy, since then I'm suffering from extreme fatigue, I'm not working at the moment either, I have to admit I couldn't take the urso medicine it smells & tastes disgusting so for 3 years I didn't take this, I'm now on tablets, I had a ultrasound scan last week, results in a week or so, but am now having terrible itching as well as the fatigue, and menopause not nice, i asked my dr about thistle milk but apparently this isn't good to take., gas anybody else taken this? X 😬😕😲

[Shazzamattaz]

Millie where have you been lol? Xx

[Millie09]

Hi shaxzamataz, posted a similar thing to you back in Oct last year. I was diagnosed with cirrhosis in 2008 . Now 9 years on i have only been under a hepetologist since Feb this year, I am now in end stage liver disease. I asked my liver consultant about milk thistle as my own dr didn't really have any knowledge on it .well the answer was no , under no circumstances was I allowed to take it . I too have insomnia but a lot of fatigue and cannot work. The itching drives me mad! That only started in Jan this year also I have other symptoms too as I will discuss next week when I go to hospital. It's not been approved medically in the UK to take, if you look back on some of the posts you will see the answers are much the same as mine. Best check with your consultant x

[Shazzamattaz in reply to Millie09]

Thank you Hun, the itching has only just started 😕 It's the tiredness, I'm waiting for my ct scan results I had other week, but a bit concerned as I didn't take my medication for a year at one point, just couldn't, you know the tablets do they make you feel really sick and nauseous, he's prescribed me these now smaller ones as I struggle taking big tablets, i can't take the medicine form as it smelt and tasted too disgusting for me 😕 Made me heave, really nice to speak again with you, it's been a while hasn't it? Xxx

[Millie09 in reply to Shazzamattaz]

Your welcome hun!! Oh I have always been here but I did stay off the site for a little while. The tiredness really affects my every day life .It's awful making up excuses to friends and family that you feel ok but I don't like to worry then . The only one who knows the full extent is my sister as we are very close. I have my own back scratcher that I would not be without 😂. I am not on any meds for the liver apart from thiamine, b12, desunin for vitamin d, diazepam when needed for anxiety and sertraline for depression. What meds are you taking that make you feel sick, I will be telling my hepetologist next week when I see her about my increase in symptoms. Yes it's good to hear from you 😉. I would see your doctor about the meds hun. I'm ok apart from itching, tiredness, insomnia and wherever else comes my way 🙄xxx

[Shazzamattaz]

Bless you, I know exactly what you mean, I've had to let my bestie down twice for babysitting, three girls and a dog, just too much, but nobody knows the full extent only my mum and a few close friends, yes the itching for me only recently started, anxiety I also get but am not taking any meds for it, Im trying not too, insomnia yes, been waking up loads in the night too, I'm taking tablets urso ones, instead of that awful medicine ewwww its yuk! Now that's a good idea a back scratcher lol yessss may have to invest in one now 😂 As you say the tiredness is an everyday struggle isn't it Hun 😕 Xxxx

[Millie09 in reply to Shazzamattaz]

Yeah it's a bummer isn't it letting people down. I am supposed to be meeting my bestie tomorrow , I always say yes but it depends on how I am with my sleep or lack of it the night before but she understands me as she has a bone crumbling disese . I don't take the anxiety ones much, I tend to not take as much meds as I can . I'm not on urso or any meds like that . Oh trust me it was the best £1 .I ever spent 😂😂. It's always by my side day and night lol . You must get one. I had mine from my local pound shop. Yep! The tiredness is awful when it's really bad but I suppose there's nothing we can do really, and I am.not going down the sleeping tablet line either! 😏. Thank God for sky movies 😁xxx

[GeorgeDav in reply to Millie09]

Hope you dont mind me jumping in! My other half has liver disease and suffers the itching. To help relief I moisturisr with Cetraban and also have an Alo véra plant which I take a leaf off and keep in fridge and use this when required. Handy to take out with you put in small cool bag.

Hope you find help and relief. Keepsmiling😀

[Millie09 in reply to GeorgeDav]

Hi georgeDav , no I don't mind you butting in lol

Thank you for actually helping me with this itching. I have only tried the usual moisturiser but no good 😐.living on my own I can't reach my back and that's what really drives me mad. I am off out later so i will pop in to the chemist and I will look for the aloe Vera Plant too .many many thanks for your help, my best wishes to you and your other half 😊.

[Hidden in reply to GeorgeDav]

Hi

Sorry to interrupt , I also have bad itching, my Dr prescribed fexofenadine tablets which have really helped. Take care xxxx

[Hidden]

Hi,

With regards to Complementary & Alternative Medicines;

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 can actually damage the liver and lead to severe illness.

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

Milk-thistle (also known as Silybum marianum) is an over-the-counter supplement, which some people believe can be beneficial to people with liver disease. Some laboratory studies have shown the herbs active components (silymarin) have a positive effect on liver cells. However, milk-thistle is not licensed as a medicine and so studies into its effectiveness in the body have been limited, with conflicting results. There is not currently enough evidence to prove or disprove any beneficial effects on the liver. Milk-thistle may lower blood sugar levels and people with diabetes or hypoglycaemia (low blood sugar) should use caution. If you are thinking of using milk-thistle, it is a good idea to discuss this with your doctor.

If you have any concerns about any prescribed medication or are considering using complementary or alternative remedies &/or therapies always discuss this with your doctor.

We hope that is helpful,

Warm wishes,

Rebecca

[bobbycat]

Hi...I too was told not to take milk thistle.

.I am at stage 4 of PBC - cirrhosis....the medication I take is Urso and a beta blocker as I had a varise bleed....that is all except for half a sleeping tablet three times a week and that seems to be OK to take as sleep is so important the consultant said, and I have always slept badly..and a calcium, B3 tablet for bone densitiy .

I do find the Urso gives me an unpleasant stomach!! And an urgent need to go to the ladies room or it could be just the food I eat which is quite plain but had a homemade tomato soup for example at a cafe and oh that was bad for my stomach...and also chocolate upsets it! I also get very tired but not always....luckily I am retired so dont have work but I am a keen photography and am involved with competitions and events etc so it gets me out and about quite a lot, but I also have to cancel things which I hate doing.....so I understand how you all feel.

[AlFinio]

Ello Shazzamattaz 😊

I've being diagnosed with Liver Cirrhosis 2 years, on top of that I suffer from Chronic Pancreatitis and my bile ducts are blocked due to damage of both of my organs.....

And am Jaundiced....(.if there is a word like that😆)

So I've got pretty much good idea how u feel ...honey.... 😧😔

I've been taking Milk Thistle in the beginning for 6 months or so....( I did inform my Gastroenterologist about it) but couldnt see any improvement....maybe I was expecting to much from this supplement !!!

So Ive stopped it.

For my itchness, which is notorious with Jaundice and bilirubin high ...around 180 or more. ...I was prescribed Colestyramine ( Questran light powder) ....

I've been taking it for 2 years now ...when needed. ..pretty much all the time....And it does help....to some extant. ....😊 let's say I don't know what would I do without it....I've been scratching till I bleed. Result .... scars and marks all over my body. ..😦😦😦🖓🖓🖓....

So I will highly recommend it to anyone who suffer from some kind of priuritus 🖒

As for lack of energy, tiredness, oversleeping......this Extreme Weird Fatigue ( only known to people with Liver disease ) ...there is NO CURE..there is No medicine or supplements or Vitamins. ....

In the beginning it was really ...and I mean really difficult to deal with live going on around u.....and not being able to participate in it. I had to give up work- I couldn't be reliable and efficient enough..I lost a lot of " so called friends" becouse i wasnt fun enough and i become Homebound. ...But ..there is always But....in this case it was Good BUT...

I wasn't prepered to give up my life yet....so I had to find a way how to live now.....I had to learn how to live in slow....slower motions. ...

For me... personally it was extremely hard because all my "Before Cirrhosis " Life Ive been quite fitt and energetic person , enjoying all sorts of sports and activities. ...and suddenlyI couldnt do any of it😤😤😤Very frustrating 😣😣😣

I didn't want to become a 'CAN'T DO' person

So I knew I had to find a way...

AND.... i found it ...I found new word in my vocabulary ....PACING....pacing my daily activities. ...and from then....I had to get used to it in practice. ...

And .I ve learnt to take things slowly....without being harsh and disappointed with myself. ..I've learnt not to overdo ....or shall I say am still learning. ...

I know my life won't get better....so I have to enjoy and appreciate what I got....but in small doses

Sorry for such a long elaborate. ...hoping I was a little bit helpful. ..

There is one more thing....

my liver .... LUCKILY is decompensated....

my bile ducts hopefully end up with helping Stent in it

My pancreas gets help from 'pigs pancreatitis enzymes '....am taking Creon

But.... I never heard of Urso....I know I can Google it.....but maybe u could explain why you should be taking them and what for?

All the best Honey😘

Be patient with Yourself xxx

[Millie09 in reply to AlFinio]

Hi Alfino. I could not have said that any better . Up untill 8 months ago I was going just fine then suddenly things started to change, it was insomnia, then tiredness, now days of lethargy where I am so behind on things I want to do and need doing yet my get up and go has gone and left 😐. I love the idea of .. pacing.. I get myself all wound up as I can't do what I want to do when I want to do it. I can no longer make plans so to speak with other people as 9 times out of 10 you can bet I have to cancel yet I feel bad but I wished they would understand how cirrhosis affects every day life. I have now reached f4 with a very high fibro score . I just wished I had more energy as my life is passing by and I can't even enjoy doing much these days. I will know more on Tuesday 9 May as I have a double appt with my hepetologist so I will know where I stand. All my best wishes and thank you 😊

[Hidden in reply to Millie09]

Hi everyone

Sorry for only just replying. My Dr prescribed me fexofenadine 180 mg for itching , it's fantastic.

Hope you are all feeling a little better. Lots of love Lynne xxxx

[Intranslation in reply to Millie09]

Hi Millie, how did you get diagnosed? I too have a lot of fatigue and was wondering whether it was liver related. Thanks!

[Millie09 in reply to Intranslation]

Hi in translation. do you mean how was I diagnosed with cirrhosis ? have you not got a diagnosis yet or is the fatigue from something else .

[Intranslation in reply to Millie09]

Hi Millie, that right, I was wondering how you got the diagnosis. I don't have a diagnosis yet for my fatigue

[Millie09 in reply to Intranslation]

I was diagnosed in 2008 as I had ascites and bleeding . couldn't eat and was very sick .suffering malnutrition .chronic alcohol liver disease .have been doing well up untill a year ago .fatigue is bad but I suffer insomnia. just diagnosed with thinning off the hip bone so now waiting for treatment which is pain relief Injections . you do not even know you have liver trouble untill the symptoms start to show .

[Intranslation in reply to Millie09]

Thanks for your answer. I have some suspicions but my blood test is good so my doctor is not worried

[Hidden in reply to Intranslation]

Hi

Keep pushing them for answers you have to mither them or you won't get anywhere!! I've had 2 years of fighting, very draining. Please take care. Lots of love Lynne xxxx