Hello, 50+ LDN user

[jiml]

[quote pid='86643' dateline='1467930373']

Thank you for that informative post ....I am looking forward to reading updates on your progress and hope it works well for you,
I'm glad you have a support team to monitor you

As another cancer survivor I wish you good health and good luck

I shall be mentioning LDN to my rheumatologist at the end of the month and see if she is aware of the benefits I may get from it

It's a pleasure Jim meeting you and others here. Sorry for the misunderstandings. Always happy to meet fellow survivors.

Just an addendum to my last post. I'm not at all opposed to prescribed medications, when I said I don't take any. It's just that they haven't been offered as yet, other than the DMARDs. I'm sure when my COPD progresses, I'll need help. And if my PsA becomes troublesome again, I will need to explore other options available. In which case, you guys here might be of great benefit to me.

Just wondering though, does the cold effect you guys as bad as it does me?  We are having a heat wave in NYC right now, and I needed to turn on the AC. And noticed my joints are aching I'm a bit more.

Thanks.
[/quote]
Don't worry about misunderstandings we all have them trying to find what is and isn't acceptable  

I've had psoriasis over 50 years but only recently been diagnosed with probably psoriatic arthritis, I am in discussion with my dermatologist as I want to increase my Fumaderm (DMF ) dose to see if that improves my joints ..but we are at an impass at the moment and the end of the month is the next round

So in answer to your question regarding does the cold affect us....for me it doesn't. although many here say the cold and damp has an adverse affect on the arthritis

We are praying for a heatwave here at the moment it's night time and 64f and daytime around 70 to 74 just looking at the forecast for my town
It's cool and damp not good for PsA

[Kit]

Hi there

Hi there, name is Kit and I've been away from this forum for a week or two so I've only just caught up with this thread.  WELCOME Sir! 
I can see this thread has already made an impact and has attracted the interest of quite a few folks. I would like to add my name to those interested in learning more about how LDN may, or may not, assist me in my personal battle with P.

My history:  Had P. (not PsA) for over 40 years - probably longer in reality  - but not diagnosed. 
Also I'm a cancer survivor (breast) - mastectomy, lymph node removal, chemo and radio. (That was 12 years ago) 
I see we have a few things in common.

Found and joined this forum a few months back. Great place! Amazing resource.  

My treatments for P over the decades have included topical steroid creams and potions, phototherapy (UVA & UVB), DMF (Fumaderm) - that last has failed twice now over a twelve year period- and now I've started Acitretin. (I'm just 4 weeks into it)    I've a couple of journeys recorded on this Forum..... Kit's Fumaderm journey (failed but now completed) and Kit's Acitretin journey (obviously ongoing).

Maybe I've misread one of your posts but I understand you may be too busy to return here until November? Please don't leave it that long. but I do look forward to hearing how LDN has affected your condition.   

As a UK politician who recently aspired to become our future Prime Minister recently said:(Paraphrased)   "We are tired of hearing from experts - let the British people vote with their feet"  and so we did.   That politician may have helped his cause at the time but was today thrown onto the political scrapheap.

I agree with Bill.... I am much more interested in learning about your personal experience with LDN and how it affects your PsA than I am reading expert testimonials on a drug that is currently not directly associated, approved or available in many countries to those people suffering from P.



Kit

[Closed]

Hi, Kit.

The problem is one man's testimony bears little weight. I have read doctors who used LDN, saying they saw no effect on their first patients they used it on. They had Rheumatoid Arthritis. Then found it effective with other patients with RA and continued to use it in their practice with good results. Whether it works for me or not, should not influence your opinion of LDN. You must go by the science, and history. If it has shown benefits in preliminary studies, and if it is effective in clinical practice. And I think it has shown both to warrant my decision to give it a go.

Plus it is a very safe medication, dirt cheap, and benefits the entire body. We all know how exercise has been shown scientifically to improve health. Well, one of the reasons behind that, besides cardiovascular, respiratory, and muscle health,.. is the release of endorphins. And that is what LDN is all about.

So for me personally, and maybe for you and Jim as well, might really benefit from it's overall ability to improve health. It has shown in a few studies, to people who were told to put their things in order, because there was no hope, miraculously save them from terminal pancreatic cancer. To me, whether that was a few isolated incidents or not, shows the power of this medication. And it has shown benefits with a wide range of other conditions that involve autoimmunity and immunodeficiency. It has been used to treat MS, CFS, Parkinson's, AIDS/HIV, Crohn's, IBS, Cancer, Autism, RA, Fibromyalgia, Lupus, and others. These all have a dysfunctional immune system as a common denominator.

You know us, who have dealt with cancer, know full well, it didn't go anywhere. It's just waiting for another opportunity. It's said everyone beats cancer 6x in ones lifetime, without ever knowing it. That's our immunity at work, protecting us. And it could probably use, all the help it can get. Endorphins regulate and improve the function of our immune system. And LDN triples endorphin output. Now that might not sound like much, but for us oldtimers, who are probably not producing much to begin with, due to aging or illness, it might have a very significant impact on our overall health.

Also LDN, has very little interactions with other medications, so you might not have to stop your other meds. In reading testimonials of others with arthritis some continue their treatments, others cut back a bit, or quit the other meds entirely.

The only warning is not to use narcotics or alcohol with LDN at the same time.

So Kit, if your interested in personal experiences there are plenty out there to see.
Google is your friend. A good place to start would be to type LDN Psoriasis in the search box.

You really don't need my experience. The reason is said November is,... that is when it gets cold here, and then and only then, will I know if my PsA is under control and if LDN was effective for it. And even if it wasn't, I will still continue to use it regardless due to all its other benefits.

I have written about as much as I can here on LDN at this board. If I have peeked your interest, please further your research. As long as you know these three letters LDN you can find a lot of information.


Good luck Kit, all the best

[Bill]

Apologies for my presumptions. There can be great complexity with disease. I admire you for trying to think things through. My experience is very much about trial and error, but I have to keep trying if I wish to find answers.

Good luck!

Bill

[Closed]

I'm no different from you Bill. I'm sure you did much research on DMF beforehand.

Everything I take, I researched pretty thoroughly. Every supplement I take is for a specific purpose.  I have only made one mistake as far as supplements go. I have read many good things about Melatonin, but when researching the many benefits, it's imperative you research the dangers also. And I seemed to skip this step with Melatonin. Melatonin can exacerbate autoimmune conditions, and might even cause them. It is contraindicated with Rheumatoid Arthritis. And like said, I have read many studies showing the benefits of this hormone, only to miss the few that might negatively impact my health. It's no wonder people with RA, and me with PsA, wake up in the mornings, stiff and in pain. Melatonin is released during the night. 

Be sure to research the dangers as well as the benefits of any drug, treatment, or supplement. This I might add is another benefit of LDN as I can't find anything in the way of adverse effects. Other than sleep disturbances, or headaches. Along with not using with narcotics or alcohol. And you could still drink or take a painkiller, just skip the LDN that nite.

I had hoped to do a lot more here. But maybe this is better. Better for eveyone to do their own research. You can obtain LDN online and have it delivered to your door. So anyone can get this. I did.

This is not a cure, and might not be all that effective for the majority of people with psoriasis or PsA. One of the pioneer doctors said it was 50 to 70% effective in his practice with all the different conditions he treated. So even if it was 50% effective, I'm sure they weren't all remissions. In other words, how effective was it really? And he even mentions he doesn't know how biased he is, being how closely tied he is to LDN. But it is a safe medication, with no draw backs. So it's good to have a safe option, that might bring benefits not only for psoriasis and PsA, but our entire body as well.

[Bill]

Well, all the research I did might have informed me of the framework, but the reality was nothing like I had imagined. Treatment is an individual experience, and in my case it needed to be customised. I hope it all goes to plan for you, but yeah or nay I hope you write about your experience.

Cheers,

Bill

[Closed]

"Treatment is an individual experience"

So true. Everyone is different. Many supplements give recommended doses that don't necessarily benefit the individual and could possibly cause harm. Just because a certain dose was used in trials, doesn't mean that's what you should take. Always start slow and be safe. 

A lot of supplementation is a trial by error. I'm looking at a couple of more supplements to add to my arsenal. Just as with food, variety is the spice of life. You wouldn't eat the same thing everyday, so why would you take the same nutritional supplements daily. I have read good things about Boswellia and Grape Leaf extract for arthritis. Both are anti-inflammatory. Boswellia is on par with NSAID's in pain relief for joints and some say help with psoriasis. Grape leaf is a powerful antioxidant, good for bronchitis, respiratory health and energy for those who are fatigued. I always notice a boost when taking powerful antioxidants. Lipoic Acid is one, so is clove oil one drop under the tongue. Here in NYC the soot that accumulates on my widow sill is as black as tar from the traffic outside. Can't imagine how much of this crud I'm breathing in on a daily basis. Antioxidants have been a noticeable improvement for me. I guess I notice it more so, being my lungs are a bit compromised with COPD. 

So supplementation as with any standard medical treatment, is mostly trial by error. Whether a treatment makes sense, has always been whatever is the most effective and causes the least amount of harm.

[Bill]

I tried a great many things and now think how useless they were when compared to my current treatment. I have also observed that an out of control disease can have nasty spin offs. For me wheat and dairy started causing arthritis. A few pieces of toast or a couple of litres of milk could leave me in great pain a few days later. With my disease now controlled the effect seems to be much less, although I am reluctant to prod the sleeping tiger.

Medical studies are distillations of mass experience. Here you get the raw material.

Cheers,

Bill

[Closed]

"For me wheat and dairy started causing arthritis."

It's funny you mention this Bill. These are the two food groups you're supposed to avoid when taking LDN for it to be fully effective, according to a few doctors who use it in their practice. Supposedly, you need to take care of any yeast problems too beforehand. Candida and the like. Casein and gluten I guess feed the yeast and bad bacteria.

Our gut comprises 70% or better of our immunity. The microbiodome inside also contributes to our health. They release chemical signals to activate our immune cells, create nutrients, breakdown food, keep bad bacteria from overpopulating, among many other benefits. If you take care of your gut, it will take care of you. Being I'm older, had a third of my colon removed, I try to eat well, absolutely no addded sugar, plus take probiotics, and digestive enzymes. My stomach is better than it has ever been. No acid reflux, indigestion, gas or bloating. And I have regular bowels movements for the first time in my life. I used to think it was abnormal to have one everyday, cause I never did, untill now.

I love that we live in the age of scientific discovery. Seeing the mechanisms involved with nutrients and toxins. Proof of grandma's home remedies, or things once considered snake oil, actually showing benefits in scientific studies. It hard to argue with science.

But I am really pondered by the fact that wheat, a staple worldwide for thousands of years, suddenly, becomes recognized as one of the causes of chronic health. The scientists say we all have some degree of gluten intolerance. And while the mechanisms involved are well documented, and hard to refute, it's puzzling how this could be. After all, Jesus blessed the bread we eat, the wine we drink and the olives for the oil. Wine and olives we know have health benefits, but not wheat? In the scriptures there are two accounts where he feed thousands of hungry people with 5 loaves of bread. One of his miracles if you are a believer. 

Point is, we lived on bread our whole lives, and now it's considered unhealthy for us? And I know it's been genetically tweaked and stripped of nutrients, but gluten was there regardless.

I cut back drastically on wheat 3 years ago, with my parasitic infestation. They absolutely loved bread. Not eating pizza, pasta, or heroes was more of a nightmare than these bugs crawling all over me. Not quite, but that time was murder, in more ways than one. 

I'm under the impression that our bodies can't handle wheat and dairy due to our weakened state of health. Something tells me,... all of us were better able to handle these foods in the past. This world gets more polluted as time goes by. Radiation and EMF's were never a concern 80 years ago. Seems like everyday the temperature rises above 80F, there is an air quality alert in NYC. These are just but a few of the toxins that surround us that are pretty recent in nature, weakening us. Chronic diseases are at an all time high and climbing, even with advances in medicine, knowledge and science.

Now that my parasites are under control, I have to admit I'm enjoying the occasional pizza, pasta, and dumplings again. But now with the recent development of this arthritis, looks like I need to cut back again.

We used to go the bakery every Sunday morning for two dozen freshly baked rolls. Those were good times.

[Caroline]

Quote:

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It's hard to argue with science.

True among scientists.... but.... Politicians just ignore and don't understand scientists.. and pharmaceutical companies only use it for their own gain, so profit is the driver.