A while back I told you about starting low dose naltrexone (LDN) to see if I could get some relief from rheumatoid arthritis pain (Ok, I said psoriatic arthritis, but that was a false alarm). It’s been two months since I started taking LDN, so I wanted to check in on what has changed (and what hasn’t).

There was a risk that taking it would mess up my thyroid meds. In fact, that was really the only serious possible side effect. This didn’t happen for me. My endocrinologist checked my labs as I was tapering up to the goal dose, and I closely monitored myself for weight loss or other signs that my thyroid was out of whack, but things have remained steady.

The only other notable side effect, which was harmless but disturbing, was the chance of having lucid dreams, especially right after starting to take the LDN. (I talk about this a little more here.) For a week or a week and a half after starting the LDN and again each time I tapered the dose up (which happened twice before I reached the goal dose), I had dreams straight out of a horror movie.

After taking the LDN at bedtime, I would start to drift off and was immediately assaulted with gruesome scenes involving my family dying violently. Later in the night I would sometimes have MORE dreams. I would wake up in the middle of the night terrified or it would be the last thing I saw before waking up in the morning. I’ve had lucid dreams since I was a kid, but I still wasn’t prepared for the virulence of these dreams and my inability to stop them.

When I tapered for the last time, up to the goal dose of 4.5 mg., I still had the same horrifying dreams, but I was no longer waking up terrified. My brain had finally figured out I just had to get through it and it would gradually dissipate, and that is what happened. I felt like more of a spectator viewing everything from the safety of the bleachers.

Since prior to starting the LDN, I’ve been taking two meds to control my RA, a disease-arresting med called Methotrexate and an NSAID, like ibuprofen (which was to decrease inflammation, and therefore joint pain. You’ve seen commercials for this med, so I won’t toot its horn).

Both meds have some of the same side effects, and the effect of the two together can be greater than either when taken separately.  Methotrexate causes headaches, nausea, and dizziness. According to MedlinePlus, “Methotrexate may cause very serious, life-threatening side effects. You should only take methotrexate to treat cancer or certain other conditions that are very severe and that cannot be treated with other medications.” The symptoms I just listed are seriously the tip of the iceberg for this drug. I was at the point where I was on the sofa for two days after taking my once-a-week dose, completely nonfunctional. It takes weeks to know if it’s even working, although the side effects are immediate.

I believe my (former) doctor prescribed these two medications together because he was planning to quickly board me over to a biologic (again, you have seen commercials for these – the narrator goes on and on about side effects at the end of the ad, and closes with, “Do not visit countries where fungal infections are common,” as if countries advertise this information).

The thing is, my doctor didn’t ASK me. If he had, I would have told him I wasn’t ready for a biologic. I didn’t think all the options had explored. The benefits vs. risks hadn’t been explained to me in a compelling way. I simply knew the meds had potentially crappy side effects way beyond what you get with NSAIDS, and the side effects I was dealing with were already unpleasant.

I’m in the process of switching doctors, but in the meantime, I am on two meds that are uneasy bedfellows at best and an abusive marriage at worst. At the time, neither was doing a great job at decreasing my pain, so I was getting the side effects and not the benefits.

The new rheumatologist, who I saw after about a month of taking LDN and before I’d reached the goal dose, I got permission to decrease my dose of Methotrexate. She warned me the pain might get worse, but it didn’t. The side effects improved, though. I think that’s due to the LDN.

I talked to my new provider again now that she has my medical records in hand, and was given permission to get rid of the NSAID, given how good I’ve been feeling. Hopefully I’ll feel better (less side effects) without bringing the pain back. When this posts, I’ll have been off the NSAIDS for about three days. If getting rid of the NSAIDS doesn’t work out, I’ll probably have to try something different than Methotrexate, since my new doctor and I both agree mixing that with NSAIDs again is bad news.

LDN still hasn’t changed the fatigue. Yet for the hours of the day when I am functional, I feel significantly better. The joint pain I was experiencing easily decreased 75%, and my “overall wellbeing” has improved. I feel more even keeled, more able to handle things. I feel like I have a little space back in my life to take care of myself, make decisions, and act instead of react.

I am seeking out sugar less. That was more noticeable when I first started taking the LDN. While I’m probably not eating as much sugar as I was prior to starting the med, I have gradually gone back to snacking on sweets during the day.

For basically my whole adult life, I was using sweets to increase my energy, and also because eating sugar feels good. Since I feel better, I’m using sugar less often as a mood upper, but still sometimes rely on it to boost my energy when I’m sluggish.

I was feeling so much better generally that I’ve been surprised that I still need so much rest. Even with continued fatigue issues, I’m getting to the end of many days with a little kick left in me. The Chaplain has definitely noticed. Usually by the time he got home, I wasn’t smiling anymore. I wanted to go upstairs in my room and lay down, or go for a walk by myself. These days, I do feel tired and frustrated at the end of the day, and I still often go for the walk or the lie-down, but I also feel… OK. Which is a lot better than I used to feel.

At the same time as I started the LDN, I also started a number of supplements recommended by a naturopath. Some of those supplements had a source of vitamin B better than that one I’d been taking, which decreases the side effects from the Methotrexate. As such, I’ve been hesitant about giving the LDN all the credit for how much better I feel. It really could be all of the above: the Methotrexate finally kicked in, the supplements decreased the side effects, and the LDN provided a gentle lift to my general mood and lessened pain.

I do believe it made a difference, though. I’ve struggled with moodiness and low level depression for most of my life, and the past few months have been the best I’ve felt in years. My body feels good, not just for one superhero day every few months (which was my reality before, and a cruel tease), but regularly. My mood is even keeled and generally positive. I have mental space to identify what’s happening if things feel off.

I’ll probably check in again about how things are going, but for now, all signs are pointing towards something auspicious, or whatever you say when things are good.