Low dose naltrexone, has anyone heard... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Low dose naltrexone, has anyone heard or used this FDA approved drug?

determinedandstrong
determinedandstrong

This drug is supposed to be a great drug for autoimmune diseases even some cancers and hiv but so far I've asked 2 doctors about it and they haven't heard anything about it. I've read on it and would love to try it, hopefully the rheumatologist I see in January will know something. If anyone has any more info or tried it I would love to hear from you.

Thanks

Amy

15 Replies
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MaryF
MaryFAdministrator

Hi, Yes I am on it, successfully for a number of years now. You will need to find a doctor who understands this drug, otherwise they can only relate to it in its high dose, The LDN Research Trust is a good starting point. MaryF

Oh thank you Mary, with having crohns disease and some lupus symptoms I think it would help. Do you feel better since taking it?

Amy

MaryF
MaryFAdministrator in reply to determinedandstrong

It would help, presumably with those you are already gluten free? MaryF

Yes, I'm gluten free

MaryF
MaryFAdministrator in reply to determinedandstrong

Do check it out, but do make sure that you main consultant is tied in with anything new you are doing, good luck. MaryF

Yeah, they haven't heard of it and being on warfarin, I don't about drug interactions.

MaryF
MaryFAdministrator in reply to determinedandstrong

The LDN Research Trust carries information for doctors and can advise on that. MaryF

Never heard of it but interested. Keep us posted thanks

Here's Dr Chris Steele talking about it on Youtube (below). If the link doesn't work just google it and it will come up top of the list. It isn't usually prescribed - as you say Drs don't know about it and it's unlicenced/ offlist. When you hear what Dr Steele says it's absolutely shocking that this is not widely available: it works and it's safe. Unlike most drugs. youtube.com/watch?v=YmUa2gL...

Thanks for the information, do you take this medicine?

Amy

Not me, no way to get hold of it.

I've been through so much these last 3 years because of medications, if only I had known about this drug with way less side effects, i wouldn't probably have all these health problems flaring up!! Do you take this drug?

Thanks Amy

I have been on it for 18 months to help lower my thyroid antibodies and it is working. Don't have my APS diagnosis yet but I'll have to see if it lowers those numbers as well.

Bexxa
Bexxa in reply to Tickytot

I would be very interested to know if it lowers your APS antibodies! Please be sure to post follow up!

Lure2
Lure2 in reply to Bexxa

Hi Bexxa,

I see you have joined us today so I would like know if you also have APS like all of us have here?

Also you have answered an 3 year old question.

I am triple positive with persistantly high antibodies all the time but my Specialists have never mentioned any drug to lower them. It is important how you feel and that they know of your symptoms and keep your anticoagulation steady and at a suitable INR though.

Best wishes from Stockholm

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