(Wed-06-07-2016, 08:32 AM)jiml Wrote: Don't me wrong, I'm sure there is good evidence that LDN is an effective treatment, but I think one persons testimonial is worth more than all the hearsay evidence, now I'm not knocking you or LDN, in fact I thank you for raising it again here, and I will be asking my rheumatologist about it at the end of the month as my rheumatologist is trying to get me back on methotrexate ( no chance)
I know you are passionate about the treatment and I admire that, but in my mind the proof will lie in your future for me, and if the treatment works for you is what I would be delighted to read...but you have made it clear that it is difficult to tell what is working for you, I would like to think it's the LDN, but could it be the vitamin D ? Or the cortisone injection ? Or any of the other supplements........

I appreciate what you are doing and hope you will continue, but I have read on other forums people singing the praises of diet, vitamins , plant extracts, all manner of things, but rarely of any lasting effect, often one post and it fizzles out.

But I'm sure yours won't be like that, and I would be inspired if I read regular updates where you tell of continued improvement and hopefully clearance,  
Jim

Yeah, I'm sorry Jim. I'm a little upset by the turn of events here. Thought I would be able to show much info on LDN, and I might have taken it out on you a little.

I have put much work and effort to obtain the best 
quality information there is on LDN. Cause as you mentioned, there a lot of hearsay and falsehoods abound out in the cyber world. 

Its not that well researched. There are few quality studies done. No one will foot the bill to do large reproducible studies. This drug lost it's patent years ago.  But what studies have been done, are very impressive. Plus If you research endorphins  you will see many benefits that you could extrapolate to LDN cause that's what this drug does, increases endorphins.

I could tell you one thing for sure. My blood tests results showing my  inflammation dropping, can't involve LDN, as I didn't start taking it untill after the blood was drawn. My C reactive protein was 30 and dropped to 12. Next blood test whenever I schedule one, will show if it has an effect, if it drops from 12. Ideally it should be under 3.But even then, it could be just the weather. The real test will come in November when it gets cold. I remember we had a few warm days in a row in March, and I thought,.. finally this arthritis is letting up. As soon as it got cold again, I was back at square one, crippled.

I started LDN on 6/7/16, so it almost a month. But as my inflammation markers showed, I have improved without it. So I can't say anything over this past month of using it. 

Did I mention this stuff is dirt cheap? $40 for a 3 or 4 month supply depending on the dosage. Recommended dose is 3 or 4.5 mg.

Good luck with your Rheumatologist recommending it. But who knows, you might get lucky he knows about it.

Maybe I could post a little info on LDN here. Mechanisms involved, and some other stuff. We'll see.

Thanks for your reply, don't be upset by this site, we are all genuine people...we have rules and they are for all of our protection.... I didn't feel you were having a go at me ( you are welcome to if you want   )

No I like your passion and yes all the information you have mentioned is readily available elsewhere online. And there is good evidence of LDN working on psoriatic arthritis.

You have alerted me and others to the possibilities, so in some ways despite feeling frustrated by not being able to post links. Your message is now out there for all to see it has already been read by almost 450 people so it's not wasted effort

But remember this is a place for the members and is policed by the members and it has been proved by the very success of the site that this is what we as members want..

I myself get frustrated at times when wanting to post some information with a link....but accept the rules

Dont be downhearted this is a great forum and full of information on all prescribed treatments and a lot of room is given to other treatments which at the moment LDN is, has it got any government  approval as a psoriasis or psoriatic arthritis treatment anywhere?

Keep posting but be aware of of what might not be allowed

And do keep us updated on your experience

Thanks, You may not think one person's journey of much interest, but to me that is what makes this site so useful. The web is awash with all manner of gobbledegook, but I would much rather read of the experiences of real people over substantial periods of time. The conclusion I have drawn about treating psoriasis is that it is about customisations rather than curealls. The big interest for me is not the generalisations, but the nitty-gritty of treatment. It is a privilege to be able to question people about such things.

It would be of interest to all here to see you record your progress. I tend to glaze over when presented with reams of "testimonials", "hypotheses", and "evidence".

Cheers,

Bill

(Tue-05-07-2016, 16:54 PM)Kat Wrote: Welcome

Lots of people here share what has worked for them, and it's interesting to see what others are doing and how it's working out for them.

Glad you found your way here!

For some reason I keep qetting Kat's post quoted for no reason.

That's because you have hit the multi quote button I'm guessing
Hit it again to cancel it and try again

(Wed-06-07-2016, 07:09 AM) Wrote: But unfortunately the forum rules here are pretty tight and I'm afraid most of what I want to share is not allowed here. So no sense dedicating a thread to LDN if I  can't present the facts, evidence, testimonials, doctor interviews, studies and so forth. 

One member's personal testimonial, should by all accounts, have little influence or value when considering a treatment plan. So Jim, I was never looking to inspire you. Was only looking to present the facts and for you to decide what you are inspire by.

I have just answered your PM about what you mention in this post, so I won't repeat it here. Apart from to say Bill's post RE: Hello, 50+ LDN user sums up what Psoriasis Club is all about.

"has it got any government  approval as a psoriasis or psoriatic arthritis treatment anywhere? "

You're joking right Jim? Funny

There are no studies done on LDN with Psoriasis or PsA. So how could it possibly be a government approved treatment anywhere..

"And there is good evidence of LDN working on psoriatic arthritis."

Please Jim, don't put words in my mouth, I never said this.
I said many autoimmune conditions. And last I heard psoriasis is an autoimmune disorder. So no, there is no "good" evidence for psoriasis. It's all anecdotal. But that's the kind you like right? Testimonials. But the fact remains that's the worst kind of evidence there is. Unless there are reams of it.

You guys are going to have to think a little outside the box here.

Yes Naltrexone is an FDA approved drug, but it's off label use, in low dose form is not approved for any condition. But doctors can prescribe it as they are allowed to prescribe many medications for off label use. Gabapentin is a classic example.

So while it is an FDA approved drug, it is not a treatment for any conditon other than it was originally designed for, which was opioid and alcohol addiction. Which failed miserably for that BTW.

I certainly wasn't trying to put words in your mouth when I said there is evidence out there about successful treatment of PsA, it's stuff I have read, not me attributing them to you ...sorry for the misunderstanding

No I wasn't joking about approval it was a serious question but you have answered it for me ...thank you

(Wed-06-07-2016, 11:59 AM) Wrote: You guys are going to have to think a little outside the box here.

I find that rather condescending. We have many members trying different treatments and we have many members that have had psoriasis for a long time, so please don't suggest that our members are not looking outside the box.  

You should have a good look through other threads and you will see a lot of different things being tried.

Get your point across about LDN by all means, but please show some respect to others.

"It is a privilege to be able to question people about such things."

Yes Bill, but this is not exclusive to this forum. And nothing about the terms of agreement of this forum makes it so.

"It would be of interest to all here to see you record your progress. I tend to glaze over when presented with reams of "testimonials", "hypotheses", and "evidence".

But that's exactly what unrefutable evidence is. It's a gathering of facts that can't be denied.

Look, I understand you like your little nook but let's not twist the facts.

I'm not here to cause any commotion in this community, I came to help. And I will abide by the rules, but let's be honest too.