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Psoriasis Club › HealthHealth Boards › Psoriasis And Psoriatic Arthritis Topics v
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My LDN Experience

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My LDN Experience
genelottery Offline
Novice


Posts: 5
Threads: 1
Joined: Jun 2016
Gender: Male
Location: India
Treatment: Topicals
#1
Thu-21-07-2016, 05:05 AM
After reading a lot about LDN, I decided to try it.
I was earlier recommended MTX but the first dose zombified me for around 3 days and I have been looking at alternatives since.

BTW, I am 36 years old.

So, I started liquid LDN on July 10 (2 mg).
Took 2 mg daily for 7 days.

I was experiencing pain in my ribs, fingers and toes (symptoms of PsA) and LDN gave me almost instant relief.
The pain is gone now and hasn't come back though it's too early to say how long this remission will last.

However, my whole body developed these red bumpy spots after I started LDN and therefore, I had to stop taking it.

These spots are going down in number and intensity three days after I have stopped LDN.

Additionally, my nail psoriasis has become worse as one of the fingernails had small amount of blood coming from the sides (though it seems to have subsided now on its own)

I never had such bad psoriasis on my ears. My ears are covered in plaque so much that I can't go out.

I think the red spots are due to the filler used in the tablets that i used to prepare liquid LDN.

But I am not sure about the psoriasis on ears.

Just wanted to share this experience.
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Caroline Online
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,589
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#2
Thu-21-07-2016, 07:28 AM
Thank you Genelottery for sharing this experience. I feel it's very valuable.

Your reaction to MTX is similar as mine is.

I understand from your description that LDN might be of help, but you may have introduced some problem with the filler you have used, so I understand that you are going to make a change to that?

Is the result of using LDN sufficient for you to try a continuation?

cheers,
Caroline
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genelottery Offline Author
Novice


Posts: 5
Threads: 1
Joined: Jun 2016
Gender: Male
Location: India
Treatment: Topicals
#3
Thu-21-07-2016, 08:24 AM
Caroline,

I do want to continue with LDN but I am facing a problem.

I am from India and I used brand name Naltrexone tablet (Nodict) to make liquid LDN (I am not sure about the fillers used in these tablets).

So far, I haven't been able to locate a compounding pharmacy that will make it from the raw powder.

I will try some other brands but that depends on how soon my ear infection subsides and allows me to go out.

BTW, I just saw an ENT specialist and swelling in my ears is due to fungal infection (it has been raining incessantly here for the past few weeks)

I think the psoriasis flare on ears may be due to fungal infection.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#4
Thu-21-07-2016, 09:12 AM
Hi genelottery and good to see you on the forum. I'm glad you have started to record your experiences here as many of us are interested in hearing from someone talking the drug LDN  I hope you can find some help getting the filler for making the tablet right, and the fungal infection clears up in your ears.

Do keep us updated as LDN is a very interesting subject. I look forward to reading more of your experience Thumb

I hope you enjoy your time on the forum, you will have noticed that this is a safe and friendly place to post your views and thoughts.
Jim
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genelottery Offline Author
Novice


Posts: 5
Threads: 1
Joined: Jun 2016
Gender: Male
Location: India
Treatment: Topicals
#5
Fri-29-07-2016, 03:48 AM
Update time

I still haven't restarted LDN but my experience so far has been complete opposite to what i have read online.

I found it highly effective for PsA as my pain was completely gone in the first 2 days.
It has now come back 10 days after I took the last dose.

However, I now have psoriasis on my knees and elbows, there wasn't even a spot there earlier.

Also, the number of spots on my back have multiplied and P below the knees is as bad as it was.

I was prescribed amoxicillin (500 mg) for 5 days (twice a day) for my ear infection.
It did clear the infection but led to extreme dryness in my eyes and elsewhere on body.
Extreme dryness meant I could not do anything as looking at a screen for just 2 minutes caused a lot of pain in the eyes. 
I am better now after using an ointment and eye-drops.

I may restart LDN (will try a different brand) after it stops raining and there is some sunlight.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#6
Fri-29-07-2016, 08:02 AM
Some good news and some not so good news about LDN

It seems to have worked on the arthritis but possibly made the psoriasis worse .....

I will read with interest your next entry to see if things change and the psoriasis as well is improved

Good luck and thanks for posting Thumb
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Caroline Online
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,589
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#7
Fri-29-07-2016, 18:20 PM
Thanks for the report gene lottery.
It remains difficult I think to really point out the cause of the increasing P
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JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#8
Sat-30-07-2016, 09:55 AM (This post was last modified: Sat-30-07-2016, 10:00 AM by JohnB.)
Hi Genelottery, just a thought as LDN from what I understand, operates by modifying endorphin production, could this be in effect a pain modifier, so you are feeling less pain but no real improvement in the PsA or PS? I find the LDN thing very interesting but I can't get my head around how it works in alleviating PS and its associated ills.

(Edit)
Is the LDN being proscribed  by a Dermatologist for the Ps/PsA, or is it available over the counter?
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genelottery Offline Author
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Posts: 5
Threads: 1
Joined: Jun 2016
Gender: Male
Location: India
Treatment: Topicals
#9
Sat-30-07-2016, 11:36 AM
Hello JohnB,

LDN is available only on prescription here but buying prescription meds without prescription is not that difficult.

Regarding your question about how LDN works on PS, there are some testimonials on the internet regarding LDN success.

One individual claims to have treated scalp and nails psoriasis 6 times with LDN.



Edit by Fred: Reference to other websites removed.
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Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#10
Mon-29-08-2016, 08:49 AM
Has it stopped raining yet? I dont think that I could defer measures to counteract psa for the sake of the weather. You must be bloody tough.

Cheers,

Bill
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