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Joined: Jul 2013
Posts: 376
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lulu12 Offline OP
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
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Joined: Jul 2013
Posts: 376
Has anyone tried LDN? I have tried it a few times and I usually feel pretty good the first 2 days and then my pain increases. I am on a really low dose of 1.5 mg.

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
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I've been on 4.5 mg since sept 2009.

It has really helped my enthesitis.

Not sure how much else it helped.

But not tearing tendons and ligaments anymore and my tendonitises getting better, a lot better, was good enough for me to keep it in my toolbox.

I've had to do other things for the flares, SI joint, etc.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jul 2013
Posts: 376
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lulu12 Offline OP
Fifth_Degree_AS_Kicker
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Joined: Jul 2013
Posts: 376
Sue,

Did you have increased pain on it at first? Did you start at that dose?

Joined: Dec 2003
Posts: 1,368
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Dec 2003
Posts: 1,368
Hi


You may be a person who has the side effect of joint pain from this drug. I couldn't tolerate it at all. My dose was 2mg and gave me muscle and joint pain.
Have you looked up the side effect profile on it.

Janet

Joined: Feb 2011
Posts: 238
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Feb 2011
Posts: 238
How were you taking your LDN, was it compounded in tablet (pill) form?

A common filler compounding pharmacies use in tablet form is "Avicel", and there are reports of people doing poorly, not just with Avicel, but with various fillers (lactose, etc.) depending on the individual.

My compounder could not find a cost effective solution to let me have acidophilous as a filler, so I went with the pure Naltrexone powders in distilled water (liquid LDN, refrigerated). This way it's been easy to play around with dosage. Have settled on 3mg for now, as I'm thinking 4.5mg makes me grumpier - not sure how true that is... I'm guessing I'd do better without work in general, er, I mean, work stress!

http://www.lowdosenaltrexone.org/gazorpa/LDNFillers.html


B27+, 2nd Rheumy: 'inflammatory backpain'.
IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain.
Managing inflammation very well with diet since Jan 2011.
Slow but consistent reduction in symptoms year by year.
Haven't seen a physician in years.
Took LDN (4.5mg) between 2013-2015, 2018-2019.
Joined: Jan 2008
Posts: 21,346
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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For me personally, no side effects. I started at 1.5 mg, then 3.0 mg, then 4.5 mg within a month or two ramped up. Never a side effect I could detect.

And the positive results were subtle. I basically just stopped tearing tendons and ligaments and my tendonitises just kept getting better and better. So it was more of a long term thing. When i could say "Its been a year, two years, 4 years since I've torn a tendon or ligament" that's how I knew it was working.

Before that I had a bunch of minor tears and a few pretty serious ones; never any ruptures, but tears, yes.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jun 2007
Posts: 530
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Veteran_AS_Kicker
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Veteran_AS_Kicker
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Joined: Jun 2007
Posts: 530
did nothing for me at all.

Joined: Sep 2009
Posts: 1,306
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Sep 2009
Posts: 1,306
I have MS and I take 1 MG each night before I go to bed. I have it compounded. Been taking it since 1999, so a really long time.

I can tell when I run out and am waiting for a refill because my body begins to feel achy and my joints begin to hurt a little more than normal.

Sounds kinda strange that such a tiny pill could make such a huge difference in my dealing with MS but it really does. smile


- Carpal Tunnel in BOTH hands
- Depression (MDD) Major Depressive Disorder
- Pituitary Adenoma
- Scoliosis
- Spinal Arthritis with bone spurs on spine
- Multiple Scoliosis diagnosed
- Herniating spinal disc
- HLAB27+
- Final diagnosis: Mild lumbar spondylosis

Previously told Mechanical Back 'Issues'. Hate this term!
Joined: Nov 2001
Posts: 18,149
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,149
Likes: 5
I hadn't realised that you are on LDN, Angie. I'm so glad it helps!

Love and light.


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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