The Most Effective Treatment for Autoimmune Illness? : Putting Experiences of Patients First

a chronically ill patient going to bat with ivory towers

Heck yeah I meant to rile you up with that title, but I promise I’m not totally blowing smoke. If you’re not riled up, prepare to be when you read this statement about Low Dose Naltrexone (LDN) from wikipedia:

They claim LDN is able to treat diseases of immune dysfunction (such as HIV) in addition to autoimmune diseases, where improving the immune system could make the autoimmune disease worse….Steven Novella also writes that claims of treating a wide range of diseases with different etiologies should be a red flag to be skeptical about these claims, which are likely to be “bogus treatment with claims that are literally too good to be true.”[4]

http://en.wikipedia.org/wiki/Low-dose_naltrexone

Reading this made me downright belligerent, by which I mean I downed a pint of green juice with verve & pulled out the fly-swatter with force! Sometimes my masculinity frightens me.

If you haven’t guessed already, this blog is about LDN, but I didn’t write this blog with the intent of arguing with irrational skeptics like Steven Novella. Initially I put on my armchair (la-z-boy) researcher cap in hopes of finding the drugs which are effective in the highest number of common autoimmune (or autoimmune-like) illnesses: lupus, RA, MS, fibro, MECFS, crohn’s.

The title of this blog was written a bit facetiously, as a wink to the way the medical community readily shuts down self-reports from patients. The real argument I’m making today is that the hard numbers on LDN suggest that it may very well be the most effective medication for autoimmune illness, but we need much larger sample sizes & clinical trials to know for sure. The following is a homage to the informed patient making informed decisions, with a special wink to Steven Novella:

Steroids the most common, but Low Dose Naltrexone caught my eye

After scanning the data troves of WebMD, I found that Prednisone is by far the most popular drug and is a corticosteroid. Humira & Kenalog are the two drugs which are most common between lupus, RA, MS, crohn’s. Humira is an anti-TNF drug, while Kenalog belongs to the corticosteroid family. In laymen’s terms, the 3 most popular drugs for these illnesses are highly anti-inflammatory. Note that steroids like prednisone are also ”notorious for their adverse effects, such as weight gain, mood swings, diabetes, bone and muscle loss, cataracts and joint damage.” – source. Based on the popularity of these drugs, it’s easy to see why autoimmune diseases are considered by Steven & other “experts” to be due to too much immune system.

However, something kept poking at my eye when I was scanning these drugs. I had to do a double-take to realize that besides steroids, LDN was the single medication coming up most frequently for these conditions. If you’re hearing about LDN for the first time, it primarily raises endorphin levels and “down regulates but doesn’t eliminate inflammatory cytokines…restores CD4 levels in HIV infection…increases levels of NK lymphocytes” – source. So it has an immune-boosting effect, not just an immune-suppressing one like steroids. The million-dollar question:

Which is more effective? Steroids like Prednisone or Immune Modulator Low Dose Naltrexone?

Thanks to curetogether, I was able to compare not just popularity but average effectiveness across six different illnesses with distinct autoimmune-like presentations: RA, lupus, fibro, crohn’s CFS, and MS. Here is what I found for effectiveness rankings:

LDN Rankings: (n=sample size)

RA ranking: 1st (n=21)

fibro ranking: 1st (n=51)

crohn’s ranking: 1st (n=30)

cfs ranking: 1st (n=66)

ms ranking: 1st (n=117)

Lupus ranking: N/A (not enough data)

Steroid Rankings: (n=sample size)

Lupus ranking: 1st (n=19)

RA ranking: 2nd (n=67)

crohn’s ranking: 2nd (n=112)

MS ranking: 3rd (n=72)

CFS ranking: N/A (not enough data)

Fibro ranking: N/A (not enough data)

*Note: I’m only listing ranking for oral medication, and excluding lifestyle changes & other complementary therapies

Here we can clearly see that in RA, MS, & crohn’s, LDN came out ahead of steroids in effectiveness. Keep in mind that the sample size is much smaller for LDN (since it’s used off-label & not FDA-approved for anything, of course). Also keep in mind that pilot studies with smaller sample sizes than 20 have been used to announce the potential of new cures. Seeing as LDN is the #1 rated medication across the 5 illnesses where there’s a sample size of n>20 and n=117 in the case of MS, I think we have enough data from the source to pose the question:

Autoimmune Disease: a combination of excess inflammation & immune deficiency?

As a case study, let’s look at CFS which has autoimmune-like presentations with elevated inflammatory markers like TGF-beta 1 & rnase-L, yet obvious signs of immune deficiency like low natural killer cells. Perhaps LDN normalizes the immune system by reducing the excess inflammation and restoring immune deficiencies such as NK cell & CD4 counts, as was found in HIV patients by Bihari – http://www.lowdosenaltrexone.org/ldn_and_hiv.htm.

http://www.lowdosenaltrexone.org/ also suggests that autoimmune diseases are primarily due to an immune deficiency which leads the immune system to stop distinguishing “friend from foe”. I think the data certainly calls for more research into this.

Final Thoughts

I disagree with wikipedia’s statement that ”improving the immune system could make the autoimmune disease worse”. To me, that statement utterly ignores crowdsourced data. The fact that LDN is ranked #1 when steroids are ranked #2 addresses questions such as

Q: “Maybe LDN is basically a mini-steroid?”

A: If it were a mini-steroid, why would a low dose rank higher than a steroid given at clinically-proven strengths?

Q: “Maybe these patients really have an autoimmune illness”?

A: If these patients didn’t have an autoimmune illness, why would steroids be ranked so highly?

That steroids are rated highly but still below LDN suggests this: there is no doubt that pure immune suppressors work for autoimmune illness; it’s just that LDN might work even better and we need much larger sample sizes & clinical trials to know for sure.

Disclaimer: The information in this blog is not advice, and should not be treated as such. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider.

Christopher Messina

Thanks Joey. I’ve been taking LDN for a while now and it’s hard to tell if it’s doing anything – it definitely hasn’t caused anything negative and it’s cheap enough so I plan to keep taking it.
Amy Padgett-McCue

We have to be extremely careful here. As a biochemist working in medical research, even an “n” of 117 is far to low to take as a good number. The good studies have “n” of 1000+. You also have to think about the method of the study. Did the researchers do their due diligence with informed consent? If they did, you can’t use the statement of excluding health practices. It’s been my experience that those involved in studies are more aware of their bodies, are for the most part “ideal” patients. This means, with no fault of the researchers or the participants, there will be some outside influence that goes undocumented. When you compare these study numbers with the total number of those suffering from these diseases, it’s a miniscule percentage.

Another issue to consider is any conflict of interest from the study’s authors. It may be something as simple as the study being conducted by researchers and physicians who draw salaries from a pharmaceutical company making LDN or it could be as small as the study being conducted by a research group who receive free samples of the drug they are studying. That in itself is a severe problem in the medical research field.

The clearinghouses such as the one mentioned can be swayed as well. Many physicians will contact those agencies and ask to participate. These physicians don’t necessarily have to disclose they just received a shipment of free samples of any of the most commonly used drugs.

And just a note on our immune system. To lump the immune system into one category is a gross mistake. This particular system is one of the most complex in our body. There are many separate functions within the one system. Whether its T cells, B cells, macrophages, or any of the other types of cells, each one operates differently. Lupus mechanisms involve B cells only. HIV involves Helper T cells only. It can in no way be said that all autoimmune diseases affect the entire immune system. This isn’t an all or none proposition. Bacterial infections are handled differently that viral infections; hence the need for all those harrowing finger sticks and blood draws. Physicians can tell exactly what is going on by which of the white blood cells are elevated.

In short, this is a very complicated issue and definitely one that needs to be looked at very carefully in a non-biased atmosphere. The real problem is getting the funding for such an endeavor.

Joey

Hi Amy,Thanks for your detailed response. I trust that many share the perspective you just laid out so clearly. I agree with your points about being cautious, esp. about the sample size being too small to draw any distinct conclusions. However, I may have been unclear about something: all the metrics I used were completely crowdsourced from patients, not from doctors, studies, or clearinghouses.

Although there are disagreements on how we should take this crowdsourced data, as a patient for nearly a decade, I think that self-reports are highly underrated, especially with a decent sample size. If anything, I find that crowdsourced data often underreports success. For example I started a crowdsourcing document for GcMAF a few years ago, and although the success rate never exceeded 50%, the doctors studying this all reported success of >60%.

The main point I was trying to make was this: if we’re going to debunk the importance of this data on LDN, then we need to do the same for the steroids that are ranked below it on all the same crowdsourcing sites. The fact that there is such consistency in the rankings means to me that this “pilot data” warrants serious consideration in the form of clinical trials, not that LDN is conclusively the better medication.

As for what patients should do with this data, I think patients need to become educated consumers & make informed decisions as part of a partnership with their doctors. I believe letting the medical community dictate what we do is part of the old paradigm, simply because our doctors are institutionally prevented from keeping up with all the latest data. That’s something we as e-patients can bring to the table. - Joey

Pingback: Th17: A Breakthrough Treatment For Autoimmune Illness? | HealClick Blog | Information on Autoimmune Illnesses