When the autoimmune system is haywire all kinds of things can happen and arthritis is one of them.  Before I was diagnosed with cancer, I was exhibiting arthritis symptoms but the doctor thought it was just reactionary and, turned out it was.  When I was treated for the cancer, the arthritis symptoms went away.  But, that doesnt mean its over.  Then came shingles and other problems.  Weakness seems to be a symptom and even skin problems, eye problems and what all. 

Ashley is so young to be plagued by arthritis.  I was shocked to learn that even children can be diagnosed with arthritis but with treatment, can usually go into remission.  The key is not to ignore unusual problems thinking it will just go away. 

A haywire autoimmune system can be treated - with low dose naltrexone (ldn).

I started having symptoms of RA last autumn but I think my immune system had started going wrong a few years earlier.

I began taking ldn on 22 April (having a week earlier gone gluten and casein free, this seems to be very a very important adjunct to taking ldn). After about 10 days of mild reactions like disturbed sleep, feeling groggy during the day, I woke up one morning feeling good, and I haven’t looked back since. Some joint damage had set in and probably won’t completely disappear, but today I’m living "as if" I didn’t have RA. My skin is healthier looking, I feel and look fit, am getting stronger. No more crippling exhaustion.

To learn more you could start at:http://www.ldners.org/

Margaret

Margaret,

As I recall, very few studies have been done on low-dose naltrexone for autoimmune conditions. I don’t believe the drug is approved for autoimmune diseases and would therefore be off-label. I would emphasize extreme caution because some autoimmune diseases are over-active and have been known to flare when LDN is used.

That said, I understand UC-San Francisco did a clinical trial on MS patients and found naltrexone exacerbates the condition. Stanford University is doing a trial but it is for Gulf War Syndrome patients who demonstrate neurological deficits as a result of pyridostigmine bromide pills taken  to neutralize the effects of nerve gas attacks and by exposure to neurotoxic insecticides.

Without further scientific studies I would not be inclined to try it.

Ashley,

Maybe I skipped over it, but I don’t recall you mentioning that the only physicians who should treat RA is a rheumatologist. Not a GP, not an internist. A rheumatologist.

Andrea

Ldn does boost the immune system but it also modulates it so that it works as it should. When you first take ldn and the immune system kicks in doing its job, some short-lived flare can happen. If it doesn’t resolve itself you can stop taking it. No harm done.

I think the people who are taking ldn for MS (one woman has just celebrated her 6th year on it) would be surprised to read what you say. I shall forward it to ldn.proboards and report back.

There is a petition to the UK government asking for it to fund trials (as well, I think, as the Australian and Canadian governments), and there are many campaigns. Those of us taking ldn would welcome more studies because we could have medical expertise to accompany us especially during the first weeks. As it is, we’re on our own apart from group support on the internet - which works very well, in fact. I think anyone thinking of taking it should do as much research as possible so they understand what they’re doing. I spent 6 weeks researching and I don’t have a single regret about taking it.

I’ve had Crohn’s for 8 years now, and I hear you about the seemingly random symptoms that mysteriously come and go. I developed an eye infection that was really awful for 24 hours and then went away. I’ve had rounds of full-body arthritis that would come and go without warning, and stabbing back pains that would show up for a day or two and then disappear. You just never know with auto-immune. These little surprises and more are definitely fellow travelers. Crohn’s and RA have a lot in common when it comes to treatments. 

My family didn’t really see me as being ill. I wouldn’t show up at family gatherings if I was too sick to make the trip. When they saw me, I looked more or less fine, and if I was too sick to come, they generally assumed I just chose not to come. They never really saw the illness. I’d meet friends for lunch and look tired maybe, and not be much of a conversationalist, but even then it didn’t look that sick on the surface. I can see why nobody got it. The few people I did share my situation with would sometimes get impatient, wondering what is it now, just one thing after another. They didn’t really understand that if I went out on a hot, sunny day, I could be throwing up sick for a week. Once I was really sick for a week after eating a raw carrot. You never know what’s going to do it to you. Having a chronic illness requires a lot of patience with yourself and with everyone around you too. All you can do sometimes is be glad they don’t get it. They’d have to be sick themselves to understand. 

I’m in remission now and although I’m almost like a normal healthy person (trying to remember what that feels like), the illness and the treatments and the pills have left me overweight and out of shape. I’m starting to rehabilitate my diet and consider an exercise regimen. Ugh!

It could come back any day, but I hope it doesn’t. I want to get my weight back down and feel energetic and like myself again for a while. That’s all I ask. 

Oh, nobody told me that taking prednisone for 3-1/2 years would give me osteoporosis. It turned my bones into filigree. Every woman should know that if she’s going to be on steroids for a substantial length of time, she needs a baseline and then regular DEXA scans. Fortunately bones can be rebuilt with medication. I’m an inch and a half shorter, but I’m no longer in danger of breaking if I reach down to pick up my cat. Man oh man!!! That was the scariest part. 

Best wishes to all my friends in the auto-immune club. Hang tough. 

I can answer that, Elaine. Both RA and PsA are very close in terms of pain, fatigue, treatment. Classic RA is a symmetrical disease primarily involving the PIP joints and wrists. RA nodules are often present. PsA, on the other hand,   is an asymmetric disease most often causing "sausage deformities" of the digits, and deformities of the DIP joints of fingers and toes. PsA is an inflammatory autoimmune form of arthritis and is very similar to RA. Many people with PsA have the genetic predisoposition and often have a trigger, such as a strep infection. The hypothyroidism [Hashimoto’s] and IBD are often in coexistence with PsA. You’re on a good mix of drugs. Incidentally, look to Rheumatoid Arthritis for new treatments because generally what works for RA works for PsA.

The blood pressure increase is not necessarily associated with PsA. However, too many people with inflammatory arthritis tend not to exercise as often as they should due to the pain, and so tend to gain weight [causing hypertension and Type II diabetes].

There are blood tests to confirm RA, although not everyone with RA will test positive. And there are false positives. There is no blood test for PsA.

A fair number of people has PsA but do not have skin [psoriasis] involvement.

Ashley mentioned that more women are diagnosed than men over age 40. As I understand it, it’s thought that more women than men are diagnosed because women are more apt to see a physician sooner, whereas men tend to be good soldiers.

Ashley,

I think the moderators are used to people asking me about "MeeToo."  I enjoy talking all about him like a proud mom.

[He’s called that because every time you’re ready to leave the house, he runs up to you and, if he could talk, he’d say, "Take me, too!" 

MeeToo was in the animal shelter, abused and severely neglected, with one eye hanging out of the socket. He was slated to be killed. Got him to a vet who surgically repaired the eye, got him cleaned up, and lo and behold a pure bred Shih Tzu underneath all the mats.

He weighs about 8 pounds. He was a basket case for several years after I took him home - he wouldn’t trust anyone. He wouldn’t bite - but he’d run and hide.  It took forever to make him feel secure. He plays like a cat and loves to chase tiny stuffed animals. He’s a clean water fanatic and will stand and bark at his bowl if the water is more than 4 hours old. Can’t blame him - I like fresh, clean water, too.

Many people with autoimmune diseases find great comfort in pets, as I’m sure you do, Ashley. Because out joints get stiff the key is to get pets that will be fairly light weight.

Now - tell us about LucyLoo.

Margaret,

If standing on your head makes the problem go away, then so be it.

My intent was to point out that there aren’t a lot of studies going on in the US for this drug simply because it’s already a generic, so there’s really no motivation for more clinical trials. I don’t know how it works in the UK.

When I read the literature for the Milan study on 40 MS patients there was only one patient who suffered neurological impairment as a result. I don’t know the extent of the impairment, or if it still exists, but that would be a great concern to me.

The Standford study was comprised of 10 women with fibromyalgia. Not a really large study either. Apparently one of the methods used to measure change was the ESR [Sed Rate] results. I personally have found ESR values of little use because they don’t always reflect the 90 day windown accurately. So on that basis [and the fact that the study contained a population of 10] I was left unimpressed.

I personally would be cautious about using this drug and would make it a point of knowing what the long-term effect on  the brain is. Knowing how the drug is metabolized and if the toxicity is "cumulative" in the liver is another consideration. 

Check the link below, section "Controversy."

http://en.wikipedia.org/wiki/Low_dose_naltrexone

Your description of how I’m treating my autoimmune disease is inappropriate.

The link I gave in my earlier message would take anyone interested to discussions about the controversies surrounding ldn. There people can read what doctors and laymen are saying, or watch videos or listen to radio shows like the Mary Bradley Show. They can make up their own minds.

http://www.blogtalkradio.com/Mary-Boyle-Bradley.

We are campaigning for studies so that more doctors will be aware of ldn and more people will be able to choose it as a treatment if they want to. The campaign is totally open and transparent, and is driven by people who have benefitted from ldn and want other people to know about it so they can decide for themselves.

At the moment studies are small scale because no funds are available for large scale studies. Naltrexone has been used for about 30 years now and no permanent adverse effects have been reported. The same goes for low dose naltrexone which has been used for about 20 years now. Dr Jacqueline McCandless is using ldn on autistic children, working with their parents and achieving remarkable results.

Large scale studies are normally financed by pharmaceutical companies with a view to making a profit – full dose naltrexone is FDA approved but as it’s now generic, very cheap, there are no profits to be made to cover the cost of low dose naltrexone studies. That does not mean ldn doesn’t work. There are thousands of people using it successfully – one of them is Joseph Wouk (MS) whose experience is reported on “Google ldn”.

Here is a couple of responses from MS people to your earlier message:

“Grrr typical statements from people who have NOT tried LDN.
I did my research on LDN before I decided to take that road for my MS.
I started on 1.5mg for a month then went to 3mg where I stayed for over a year. On both doses I had immediate fatigue relief and only sleep disturbances for about a week at a time at each dose level.
When I went to 4.5mg I did have to cut back to 3mg due to increased spacicity and muscle spasms.
I overcame that by taking 3mg for 2 nights then 4.5 for 1 night etc and am now on 4.5 with no problems.
I also found that after several week some symptoms gradually vanish and have not returned, like blurred vision, much better bladder and bowel control and less fatigue. I have had no blurred vision for 18 months now.”

“The info about UCSF is completely wrong! My husband goes there and gets his LDN from his neuro there. As far as I recall the trial was very brief and for some reason only took notice of the symptom relief as opposed to the "halting the progression" part that it’s meant for! My husband, who has MS, has been on LDN for nearly four and a half years and has not had one exacerbation.
Stanford is currently in the middle of a trial using LDN for Fibromyalgia.”

Hi Ashley, Thanks for posting your most interesting blog, and yes RA is a painful debilitating disease, and the frustrating part is that it takes so long to be diagnosed or referred to a Rheumatologist.  The public awareness of this disease is so low and as 1 in 100 people get diagnosed with this condition, it should be more in the forefront in the medical world.  I don’t know if you’ve seen what appeared on the news in the UK, but here’s a link which may interest you http://www.itv. com/news/ articles/ arthritis- slow-to-be- treated-37616453 0.html 

As with all autoimmune diseases, these are caused by an underactive immune system and I have researched Low Dose Naltrexone quite extensively and it makes absolute sense to me.  Unfortunately there is no cure to any of these diseases - RA, cancer, MS, UC/Crohns, Parkinsons, you name it.  But a lot of these diseases can be helped by LDN by boosting the endorphins to regulate the immune system to deal with these illnesses which will slow down the progression and in some cases halt it.  Perhaps I can explain our take on how LDN works and believe me there are no damaging side effects with LDN and I think we’d know about it if anyone had suffered from brain damage which is your concern. 

LDN works by boosting endorphin levels and opioid growth factor. This is the key to why it works in the body. The animal body works using endorphins, which boosts the immune system and repair cells and acts as a pain killer. This is why they get produced in active muscles, in order to be prepared for any injury or insult.
In the night and early morning, the body produces larger numbers of endorphins for the maintenance of the immune system and the repair cells, and also in the control of tumour development. This is why young healthy individuals are unlikely to develop cancers. This process is essential since the world is full of bugs and viruses trying to eat us one way or another, and that is why we have these immune and repair systems. Without them, we wouldn’t last a day. So, if endorphin production get’s damaged by the stresses of life, as it does, then autoimmune diseases and cancer and much else besides can get a hold. This also explains why these type of expensive diseases are common in the west. We stress our immune and endorphin systems with pollution, overwork, being indoors all the time, and all that on top of the natural climatic issues of dark winters causing lack of vitamin D and the genetic and physical factors that make us vulnerable to specific conditions etc.
LDN fixes the endorphin part of this system, which drives the rest. You still need a good diet to feed the process, and it won’t fix stuff that is smashed – regeneration is beyond humans at the moment, until we get stem cell therapies working properly. But it can stop these diseases and many times even create reversals and improvements of varying degrees.
This seems to be a reasonable explanation of how this drug is working, and we can see that sometimes it will need help from more conventional therapies, but it should be a front line treatment, which leaves the doctors addressing what is left after it has done what it can. The healthy body in ‘homeostasis’ – (which is when the body is in balance internally and with all the bugs trying to eat it) – is what keeps us alive, so when helping to restore it become possible, ie by using LDN, then it is intelligent to use it, especially when it also halts and often improves such devastating diseases.
The reason we are wanting clinical trials in the UK and petitioning No 10 Downing Street is to urge the Govt to take the necessary steps to trial this drug and achieve the licences necessary to make this drug available on the NHS.  Currently, this lack of a licence is preventing many GPs from having the confidence to prescribe it. Absolute madness seeing as they’re only too happy to dish out medication that only works short term and often brings on other diseases, or don’t work at all.  We want the medical profession and the public to be aware of LDN and let everyone have a choice with what path they would like to take re their health.  I do hope you will look into LDN, you will find many helpful sites on the LDNNow website and I would encourage you to look at John Donnelly’s ldndatabase and Cris Kerr’s book - Those Who Suffer Much Know Much - and aint that the truth here??

I wish you the best of health and luck in the future.

Best,

Jayne