Looking for info on Naltrexone please. - PBC Foundation

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Looking for info on Naltrexone please.

Jill68 profile image
11 Replies

I have had the 'dreaded itch' for 7 months now, antihistamines give slight relief as does Aveeno moisturiser. I have tried Questran which didnt work, Rifampicin which worked but I suffered terrible side effects and my liver tests were really bad. I have been offered Naltrexone by my Consultant which is an Opioid antagonist!! The side effects sound awful and I am a bit scared to try this. Has anyone else tried it or is anyone taking it at the moment? If so is it as bad as it sounds?

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Jill68
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11 Replies
zipitydoo profile image
zipitydoo

Sorry I havent even heard of it. I have just been put onto Questran. Not noticed any relief yet but am wondering if its one of those you have to give time to work.

Jill68 profile image
Jill68 in reply tozipitydoo

I stuck with Questran for about 2 months (have tried it twice over the last 6 years) but didnt help at all, I hope it works for you. Thanks for your reply. x

Derann profile image
Derann

hi, my doctor put me onto FEXOFENADINE at night for the itch. it really helps. i dont get much itch at all at night. hope this helps.

Jill68 profile image
Jill68 in reply toDerann

I am currently taking 2 different kinds of antihistamine, 3 of one and 4 of the other, helps in the short term but then itch comes back with a vengeance!! Thanks for your reply. x

itchyandscratchy profile image
itchyandscratchy

i was offered this but the side effects sounded too scary so gave it a miss although am concidering it now but there are other things to try. I tried sertraline as well as rifampicin (sadly both upset my lft's), also uvb treatment, go back and ask what other optiions are available. With questran it takes a while to work and its less effective if its not taken at the right time. speak with the foundation they have a wealth of knowledge on treatments. the itch can have devastating effects on you, it has almost driven me over the edge at times, so have utter sympathy for you, good luck x

Jill68 profile image
Jill68

Thanks for your reply. I have been offered sertraline too but side effects of it sounded worse than naltrexone I thought. I have tried the Questran twice over the last 6 years but it had no effect whatsoever. I thought I might go to the sunbed twice a week and see if that helps - did you get uvb treatment on nhs? I saw my consultant last week and said naltrexone and sertraline were the only other two options as I had tried everything else, including the cheese grater, lol. I read one of your earlier posts and can totally relate to the cutlery drawer thing, Im thinking of getting one of those big loofa things for the shower - it might be a handy scratching implement!! I have to let my consultant know what I want to do but if I itch again tonight like I did last night then I think I will take any drug going, regardless of the side effects, lol, its a good job we can laugh about it!!! x

itchyandscratchy profile image
itchyandscratchy

its a real living nightmare! ! have to admit that despite the fact both sertraline and rifampicin made me ever so ill, they helped a bit... having said that I have heard that if taken on low doses built up to higher levels that naltrexone can be very good, last consultant appointment I had mentioned transplant for the itch-dont personally want to go there just yet, also cant remember what its called but some kind of plasma/blood exchange?? sorry bit of brain fog stopping me from thinking of the correct name?!? I do get the UVB on NHS and I dont know if this helps the PBC itch or the damage the PBC itch caused. but hell I dont care!! so far I have found the most useful aid to be the cheese grater, nail scissors and a bottle opener- but I dont recomend any of those! keep the humour Jill.x

Jill68 profile image
Jill68 in reply toitchyandscratchy

Lol, cheese grater & scissors.....ouch, now bottle opener for a nice wine to knock you out for a few hours so you dont feel the itch, that sounds like a useful utensil!! Im planning going for a sunshower tomorrow & will speak to my GP about UVB treatment on NHS (I work in my GP surgery which is very handy at times). My consultant said much the same as yours, if naltrexone and sertraline dont work then the next thing is the blood cleaning, followed by transplant if that doesnt work. I am not ready to try either of those drugs at the moment as Rifampicin made me feel so crap. Its a no-win situation, you either put up with the itch or feel crap on the drugs that take away the itch!!! Right where did I put that bottle opener........ x

itchyandscratchy profile image
itchyandscratchy

LOL, I like your thoughts on the knock out treatment!!

Hope you got on ok today Jill68?

Jill68 profile image
Jill68

Hi, just wanted to update you on the dreaded itch...........IT HAS GONE!!!!!! I started on Naltrexone liquid 2.5ml and upped the dose every 3 days until I got the itch under control, have had to up it another couple of times but I am currently taking 25ml (maximum dose) daily and its working :))))))) The liquid tastes absolutely disgusting but now that I am on 25ml, I can start on half a 50mg tablet. One very happy girl here.

SunnyXXOO profile image
SunnyXXOO

Dr. Mercola and Dr. Cowan Discuss Low-Dose Naltrexone

Mercola 54,034 views

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Published on Jun 29, 2016

articles.mercola.com/sites/art... Natural health expert and Mercola.com founder Dr. Joseph Mercola interviews Dr. Thomas Cowan, a strong proponent of using low-dose naltrexone (LDN) for autoimmune diseases.

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