I've been using low dose naltrexone (LDN) to treat my autoimmune disease for almost 2 months and now is a good time to give an update on my progress. By the time that I started LDN, my GI symptoms were already being controlled through diet. I decided to add LDN to my regimen because I was still having extra-intestinal symptoms that diet was not helping, including joint pain, muscle aches, and fatigue. I also felt that my immune system was just not functioning as it should. The flare that I was in earlier this summer took a lot out of me and I still wasn't feeling "well", even though the GI symptoms were gone. Another concern was something that I just recently put a name to. For several years now, I've been dealing with athletic injuries that never seemed to heal. I went through several rounds of physical therapy without improvement. The doctors could never find an explanation for my continuing pain because the MRIs remained normal. A recent visit to the rheumatologist has given me a name for this issue: enthesitis. Enthesitis is an inflammation of the sites where the tendons and ligaments insert into the joint. It is often caused by autoimmune disease and it affects areas of stress or injury. Even before I knew the cause of this, I was hopeful that LDN could help it. Side effects: I have not experienced any adverse side effects from LDN. At first, I was quite nervous about the reports of "vivid dreams" that LDN users often experience. For some reason, I equated this with having nightmares. To put to rest any fears out there that may be similar to mine, I have not had any nightmares! I do recall my dreams more often and they do seem very real, but it is quite manageable and not disturbing in the least. Some LDN users report difficult sleeping within the first few weeks of use. I did notice that the LDN gave me a small surge of energy after taking it at first, but it didn't keep me from sleeping at all.
I compound naltrexone tablets into LDN liquid myself. I decided on this method after the trouble that I went through in obtaining LDN (see this post). My only regret with compounding it on my own is that the liquid does contain a small amount of lactose because the naltrexone tablets have lactose as a filler. Unfortunately, I am so sensitive to lactose that this miniscule amount does affect me to some degree. I find that if I take the LDN with a digestive enzyme tablet that contains lactase, it does help. It does not cause enough of a problem that I would consider stopping the LDN or getting it through another source.
Joint pain: I recently discovered that the joint pain I've been experiencing is due to inflammatory arthritis. The exact type of inflammatory arthritis has not been determined. Within the first week of using LDN, my joint pain disappeared. And then it returned with a vengeance a few weeks after. Since then, it has come and gone. I started my LDN dose low (1.5mg) and I'm slowly titrating up every 2 weeks. I'm currently at 3.0mg and while my joint pain was extremely bad last week, the last few days it has disappeared again. I've started to notice a pattern that I think indicates that I just haven't found the optimal dosage of LDN yet. Every time I increase the LDN dose, my joint pain seems to get worse for a few days. The pain then disappears until I increase the dosage again. I am hopeful that when I find the optimal dosage, the joint pain will completely resolve. I know I haven't found the optimal dosage yet because I'm not experiencing any lasting negative effects when I do increase the dosage. The dose of LDN used in the clinical trials for Crohn's disease was 4.5mg, so I'm going to keep increasing until I hit 4.5mg or until I start feeling worse overall instead of better on the LDN. You can tell that the LDN dose may be too high if you start experiencing headaches or more fatigue.
Muscle aches: The all-over muscle and body aches that I was having, generally a feeling like I had been hit by a truck or was a chronically ill 80 year-old, have disappeared. The muscle aches started to resolve within the first few weeks of using LDN and they have not returned.
Fatigue: The fatigue, which I describe as an exhaustion that you feel to the bone, has slowly improved. On top of my autoimmune issues, I also have adrenal fatigue and it's impossible to separate the symptoms of adrenal fatigue from the fatigue associated with the IBD. I do feel that the LDN greatly improves the quality of my sleep. I'm still not getting as much sleep as I would like (there are just not enough hours in the day!), but I feel much more refreshed on the sleep that I do get. I no longer have the feelings of complete and utter exhaustion and I have more energy to do the things that I enjoy. I am slowly transitioning back into a more normal workout routine for me. I am starting to feel like myself again!
Enthesitis: I have not noticed any significant improvement with the tendon/ligament pain that I have in areas of old injuries. It seems as worse as ever. However, I am hopeful that the LDN will eventually regulate my immune system and perhaps reduce the inflammation that I'm experiencing in these areas.
Overall Immune System Functioning: Overall, I do feel that LDN is strengthening my immune system, along with my regimen as a whole. Previously, I was very susceptible to illness. If someone sneezed two floors below me, I would end up with a cold. Despite being around ill coworkers and patients, I have not been sick at all since starting this regimen. I feel much better all the way around. It's difficult to say how much of this is due specifically to the LDN compared to other components of my regimen. I strongly believe that the diet is the most important change; without the dietary change, I don't think the LDN would even begin to touch any of these issues. At the same time, I believe in the science behind how LDN works to strengthen the immune system. I continue to be confident that it is a great addition to my autoimmune regimen.
I would love to hear about your experiences with LDN. How has it helped your autoimmune disease?