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LDN (low dose naltrexone) #282189
12/03/18 05:19 PM
12/03/18 05:19 PM
Joined: Apr 2016
Posts: 48
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RachelK Offline OP
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RachelK  Offline OP
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Joined: Apr 2016
Posts: 48
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
12/05/18 10:57 PM
Joined: Aug 2017
Posts: 83
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kglenn Online
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kglenn  Online
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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: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: LDN (low dose naltrexone) [Re: RachelK] #282204
12/06/18 07:55 PM
12/06/18 07:55 PM
Joined: Jul 2006
Posts: 6,610
New York
Banana Online
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Banana  Online
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Posts: 6,610
New York
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.

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