I won so glad

Okay so I have been fighting for low dose naltrexone for over a year now.. Been paying for it private for over 3 year.. I so glad I had my mum if it was not for her i don't no were I would be oh yea dead cuz I refuse to take steroids because there utterly pointless they don't work and just make u more I'll.. So now I'm happy that I got my 50mg of naltrexone happy girl... DONT JUGE THINGS BEFORE U TRY THEM. This drug saved my life and people need to know about this amazing drug 

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  • I totally agree karlimc93, I itched horrendously for years but since my doc suggested naltrexone it has improved I would say by about roughly 80%. I feel like I've got my life back. It's not a nice drug and no one knows the long term effects but when you are at the end of your tether  you will try anything.

    I hope you continue to improve.

    Take care


  • What dosage did they put you on.  Just curious. You don't have to tell.

  • U can only get the high dosage for this type of conditions I got 50mg they can't give u any lower it just won't work.. 

  • I am on 50mg, started on 12.5 and gradually increased. After taking it for 3 months my itch came back so I took myself off it (after seeking advice from my specialist) for 2 weeks then restarted gradually again and I'm pleased to say it's still working, I take it for 5 days then have 2 days off which seems to work for me. I sit get bad days but that's just the nature of this conditioned.

    Take care

    Debbie. X

  • Yes that what I do to.. When I forested started it, I was on 3mg twice a day it did work. but not at much st the 50mg. I was getting mines privately so I had to pay for this because my liver consultant would not give me this. So I never gave up the fight 

  • Yes Hun I see what ur saying.. I was not away to stand back and let them doctors tell me what to do my consultant did have a clue what was wrong with me keep changing his mind it's this no it's this so my mum took it in to her own hands.. I was on steroids for 2 years and I went from a size 8 to a size 16. I felt more ill than I was and I was on the brink of ending my life because they made me depressed... So I don't listen to any doctors Any more they are not trained properly... I have an overlap of Pbc and AIH so mines is more severe than any other liver condition.. So basically I have to liver conditions in one time 

  • Well done. It must be safe if they are doing trials for other diseases such as ms and chrons.  PBC is a "rare" condition so will be further down the line. It makes sense to me to tackle the problem at immune level as that is the root cause of so many diseases. As some of us have more than one surely it would be cost effective for the NHS. The more people know about it and ask for it the better. 

    With caution of course. If it is the wonder drug they claim.

  • My mum is on it for her MS IT WAS HER THAT BOUGHT ME IT PRIVATELY.. I don't trust these doctors they don't have a clue what they're doing could not even tell me what I had for a year 

  • Sorry but can someone please explain what this drug is and its role in treatment of pbc as I've never heard if it 😊

  • Hello spoul.

    Being in the UK I prefer to use British websites as I think certain drugs vary with regards to prescribing in other countries, even the names can be variable.

    I'd not heard of this naltroxene either but looked it up.  Apparently used for addictions originally.  I have popped the link on to a PDF I was looking at.  It states that the normal dose shouldn't be used in 'liver diseases' but this one mentioned on this site is low dose one.  I have also read it shouldn't be used alongside steroids.

    The PDF is a general guide for the us in MS.

    For now I'll plod on despite the itch as currently it is tolerable and tends to be with me at night.  But as I've stated previously on this site, it is interesting to read of experiences with symptons and how to perhaps handle/control them as one day I never know regarding myself.


  • Thank you peridot was just curious but I'll be sticking to my good old urso ha 😊

  • Urso don't won't I have been on it for 5 years and it's done nothing to help 

  • Really then I must be very lucky as I've been on it 17 yrs!

    It controlled my itch within few weeks and stabilised my liver function.

    I'd be interested to know why you think it doesn't work for you?

  • My liver function alway go up and down. They make my itch worse that's why I'm on naltrexone for my itch.. And they don't work for me because I have an overlap means I have two liver conditions in at one time... 

  • Hi

    I'm sorry about that and glad you've found something that works for you.

    All the best 😊

  • Thank u. Hope all goes well for u to 

  • Urso doesn't work for me either, I've been on it for 9 years, I've tried everything the liver specialists have suggested but nothing helped with my horrendous itch apart from nasal biliary drainage but that only works whilst the tube is in. Naltrexone for me has been a life saver as I didn't have a life before it. 

  • Tell me about it.. This medicine is a life saver.. I'm so thankful for my mum. Was not for her I would probably not be here right now.. To me urso is a pointless drug.. Yes I'm still taking it but only because I want to but I will never go near steroids again ever.. 

  • Hepatotoxicity

    Naltrexone therapy is typically given to patients with a high background rate of liver disease (injection drug use or alcoholism) and has been associated with variable rates of serum enzyme elevations (0% to 50%), values above 3 times the upper limit of normal occurring in approximately 1% of patients and occasionally leading to drug discontinuation. However, several studies have shown that the rate of ALT elevations during naltrexone therapy is similar to that with placebo. Most serum aminotransferase elevations during naltrexone therapy are mild and self limiting, resolving even with continuation of therapy. While several rare instances of acute, clinically apparent liver disease have been reported in patients taking naltrexone, the role of the medication in the liver injury has not always been clear and there has been no clear description of the clinical features of the injury. Thus, while often considered hepatotoxic, naltrexone has not been definitively linked to cases of clinically apparent liver injury.

  • Okay..I am so curious. How does Low Dose help? What symptoms has it eased?

    Someone suggested to me that I try it for the chronic pain I have from UTI's.

  • Low Dose Naltrexone re-regulates your immune system. It is taken in doses less than 4.5mg/day, and typically in the 3 to 4.5 mg range (although some people use less). Google LDN Research Trust, and Dudley Delaney's web site to read more information. It works for a wide range of auto-immune conditions.

  • 50 mg seems high. I was told low dose 4.5 - 5 mg?

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