Low-dose Naltrexone (LDN) immune therapy

Hi: Does anyone know about Low-dose Naltrexone immune therapy - LDN - for ITP? Thanks so much. Vivienne

VivienneS wrote: Hi: Does anyone know about Low-dose Naltrexone immune therapy - LDN - for ITP? Thanks so much. Vivienne

Doesn't look like anyone has tried it here on PDSA. Just off hand, it doesn't look well suited.
pdsa.org/discussion-group/search.html?query=Naltrexone&searchdate=all&order=dec&childforums=1

It has been recommended to me by a highly regarded naturopath with 35 years experience, as an auto immune balancing drug that does not conflict with steroids. He has used it for 10 years with around 2000 patients on it and a 60% success rate for autoimmune diseases.

I asked to try it for Lupus years ago and was turned down. Very few traditional doctors will prescribe this. I don't know why because some of the other meds are much, much worse.

It looks like you can order it online and a key pharmacy is in Florida. The naturopath I consulted swears by it and if nothing else is working I agree it surely can't be much worse that some of the other medications. Right now I am going to follow the medical treatment plan but keep it in mind if I get to the point where nothing else is bringing my count is up or steroids are becoming long term. Thanks for your response.

VivienneS- hello!
Wonder if you began LDN Low dose Naltrexone? I'm very curious about it. Saw my rheumatologist and she talked to me about it as an option. I couldn't remember where I had heard of it- later remembered it was from your post.
I have Sjogren's syndrome with a variety of symptoms, plus have had ITP for 9 years. My rheumatologist has Lupus/Sjogrens patients who are on it and its working for some without significant side effects- (some are having vivid dreams- not nightmares and insomnia, some people have no side effects). She has no experience with LDN and ITP but there is some understanding that it might regulate the immune system rather than suppress it. She believes it might "get at the cause of the problem" so is worth a try.

She said I would start at 1.5mg then work up to 4.5mg taken before bed? I think. I've read about it, not clear about how it works but it appears to have a low risk profile and has worked for some people. I think I'll try it in the next few weeks. It comes from a compounding pharmacy but is getting more popular so looks like its pretty easy to get in California where I live. I'd be interested in what you are doing- or if anyone else has comments. I'll post my updates with it also, probably will know more next month. I'm very curious if it could raise my platelets. This is what my rheumatologist wrote in her notes re: LDN
"Discussed LDN as an option for neuropathy. Low dose naltrexone could be a good add therapy, on as it has been used to treat chronic pain, and is being investigated for the tx of inflammatory conditions, including MS."

Posey,
I did follow some of the threads on Naltrexone that others have posted here - see my earlier PDSA search link. Have you looked through those? There was one there that was pretty scary for an ITP patient.

What I got is that it is best known for MS. MS (via antibodies) attacks the nerves and Naltrexone does too so therefore the drug may interfere with that.

The drug is also supposed to be good for Lupus, I think the steroid responding type. As I recall, the effectiveness here is less well understood. The words 'disease modifying' come to mind. And with that, it makes me think the drug modifies EBV in some way. Is it always a good way, or, is it sometimes a good way and sometimes a bad way.

You might want to ask your Doc if some got worse after trying it.

Thanks so much for your response. I decided against trying LDN at this point in my treatment. My hematologist has been really amazing so I have a lot of faith in her. She did look into LDN and found one case where it was thought that LDN caused ITP although that was rather a small sample. But her concern was the lack of data with regard to the use of it with ITP patients. My body is responding to steroids with plan B and C in place should my count plummet yet again so I will be patient and see if I can gain another remission with this treatment plan. Should I still be struggling say in a year or so, then I might try the LDN as the Naturopath was so confident about its effectiveness citing good responses in 60% of cases, although no experiences with ITP. He said that LDN balances the immune system. Unfortunately another factor is that he lives the other side of the country from me, and I feel being able to deal with someone personally so they get more of a sense of you is important, particularly as ITP treatments affect people so differently. If you could continue to share your experiences I would be very grateful.