Ra sufferer

[Rocky07]

Hi everyone from aussie land I have written about this before but I would just like to get updates has is anyone on ldn I have been on a couple of ldn websites and what I hear is amazing but the sad thing is rheaumatologist. dont talk about it they want to try us on everything else I think there is a lot of money made on pharmacuticls so therefore if there is one drug that is helping a lot of people with little or no side effects (ldn) I question why it ia not mentioned,???

[helixhelix]

My guess for the reason is that the classic drugs like MTX are effective for 90%+ of people, and that things like LDN are only effective for maybe 5% of people. So doctors work on best probabilities.

[Simba1992 in reply to helixhelix]

The statistics that I have read tell us that mtx is effective for 50-60% of RA sufferers and the time of effect varies between individuals the mean beeing only 2 years. Different combinations with other dmards and biologics may stall the progression. Real information about statistics are seldom given to patients. Doctors that have worked with LDN treating their patients say that it works for most in a varying degree, only 10-15% do not have any gain from it. There is no reason for not trying LDN since it can only make things better and has no bad effects like the toxic meds always have on our bodies.LDN has also helped many to wean off from traditional RA drugs. Everyone one of us chooses his/her own treatment line, hopefully a choice based on a well educated knowledge of the statistics and facts concerning the illness and treatment options. It is very sad that it seems to be important to close out new knowledge that can give you new hope😟

[helixhelix in reply to Simba1992]

Not closing out approaches just trying to offer some insight into the way the medical world might make decisions. If you want to change a system you first have to understand how that system operates.

[Simba1992 in reply to helixhelix]

We as patients cannot change the system but we can take responsibility over how our body is treated with the help of a medical professional that helps us understand the big picture and help us choose a line of treatment that we feel comfortable with and where we are the ones who make the final decisions concerning the treatment of our illness. We can turn to doctors who are more knowledgeable in seeing the the big picture and who treat us with respect or we are pushed into a protocol process where we lose all sense of being in control of our bodies and what is being done to them. This increases our stress and anxiety and the feeling of helplessness which in turn has a very negative effect on our illness and often increases our symptoms.

By doining our own research, looking into alternative nontoxic treatment options like diets and LDN that have shown to make a big difference in so many cases, gives us hope and should not be discouraged by anyone, Not by doctors or by those who have chosen the meds. These treatment options could at best lern from one another in forums like this, and not feel threatened by one another.

[oldtimer]

Anybody interested in reading more about the use of LDN could have a look at this website which discusses the evidence so far:

sciencebasedmedicine.org/lo...

But to summarise: the jury is still out on whether it is helpful or not and there are only pilot scientific studies on its use in auto-immune disease (Have a look yourself on PubMed). So when compared with the large amount of evidence published for other therapies, it is not surprising that the rheumatology team don't mention it.

This isn't to say that it isn't an interesting subject to research, but that's still where it is and people proposing its use routinely are ahead of the evidence.

[Simba1992 in reply to oldtimer]

Even more thorough website: ldnresearchtrust.org😊

[Hidden in reply to oldtimer]

The site oldtimer recommends is useful for understanding how some treatments may get hyped up without any real clinical evidence for their effectiveness.

The point about the type of studies conducted is key. Just because there HAVE been studies and those studies may have had positive-sounding outcomes doesn't mean that a drug or other treatment is any good. The initial surveys etc. are really very basic, you could get patients eating mud and produce favourable results as long as nobody died.

And then, the magic ingredient: The Internet Tra La! Wonderful way of spreading half-truths and distortions.

[Eiram50]

Ouch!