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LDN (low dose naltrexone) #282189 12/03/18 05:19 PM
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RachelK Offline OP
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Hi folks,
I've searched on here and only found a few mentions of LDN. For those of you who have been or are currently on it, I would LOVE to hear about your experiences. Everything from dose (did you start low and go up? from what to what?) to side effects to effectiveness. I've been prescribed it, but haven't started it yet, for various reasons.
Thanks so much!

Re: LDN (low dose naltrexone) [Re: RachelK] #282203 12/05/18 10:57 PM
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kglenn Offline
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Hi Rachel,

I haven't tried NLD, but I know that last year there was a lot of chatting about it on a different site (Inspire) that I am part of for my scleroderma. It obviously wouldn't have information regarding it's effectiveness for spondylitis, but it might give you some info on dose, titration, and side effects. Note: You do have to join Inspire to post there and you will end up getting spam emails from their 'partners' smirk


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx
Re: LDN (low dose naltrexone) [Re: RachelK] #282204 12/06/18 07:55 PM
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If you do the search, you can directly message those people. I know several people who tried it, but never heard success or failure.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: LDN (low dose naltrexone) [Re: RachelK] #282747 03/06/19 06:06 PM
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Debirick Offline
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I am researching it also. Did you have trouble getting it prescribed?

Re: LDN (low dose naltrexone) [Re: RachelK] #282749 03/06/19 06:30 PM
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SjoDry Offline
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Go to either of these sites to learn more:

www.ldnscience.org
www.ldnresearchtrust.org

On the top site, it gives a list of docs in each state who will prescribe it.

I have been on it almost two years & will never be without it.

Re: LDN (low dose naltrexone) [Re: RachelK] #282752 03/08/19 01:08 PM
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worldofme Offline
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Does LDN reduce inflammation / actually block TNF / IL?

Re: LDN (low dose naltrexone) [Re: Debirick] #282768 03/18/19 12:15 AM
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RachelK Offline OP
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Originally Posted by Debirick
I am researching it also. Did you have trouble getting it prescribed?


I hadn't heard about it -- went to a pain doc who told me about it. He prescribed it and sent the rx to a compounding pharmacy in Colorado (there apparently are only a few places that process it at such low doses and don't add fillers). The good news: It was really affordable (I think $45 for 3 months or something like that). Still haven't tried it yet.


POTS (dx 2004), AS (dx 3/2016), hEDS (4/2016) and other stuff. HLA B27+ with family history of AS. Enbrel since 6/2016. Indomethacin 2016-2019 (d/c'd in 2019 after ulcer perforated my stomach).
Re: LDN (low dose naltrexone) [Re: RachelK] #282793 03/20/19 08:52 PM
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MichaelSean Offline
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Since my primary issue these days is one of my central nervous system, I sent my rheumatologist an message on MyChart asking her opinion about LDN.

It certainly sounds promising especially for my problems.

Re: LDN (low dose naltrexone) [Re: RachelK] #282800 03/22/19 01:36 PM
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MichaelSean Offline
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So my rheumatologist is going to write me a prescription. We'll see if it helps. Some people, from the research I've done, report great success with it and others say it didn't do a thing for them. But I'm certainly willing to give it a shot.

My only potential concern is sleeping issues since I struggled with insomnia a good part of last year (it's been better in recent months). But if I get benefit from the LDN, perhaps that won't be an issue.

Last edited by MichaelSean; 03/22/19 01:38 PM.
Re: LDN (low dose naltrexone) [Re: RachelK] #282867 04/07/19 01:51 AM
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CB in CA Offline
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My brother and his wife have AS. They live in Brazil and Naltexone is what they prescribe for them. My brother also takes Sulfasalazine. My sister-in-law continues to have Iritis flares and both continue to have flares but are short lived. I asked my Rheumatologist (who is also theirs when they are residing in the USA) and I was told that it does work but it doesn't stop the progression of the disease. I was told its similar to the effects of taking Prednisone. My brother was recently told he needs to have spinal surgery in his neck. He may feel well, but the x-rays tell a different story.

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