I have been off disease-modifying therapy (DMT) for a good number of years (for a good number of reasons) and while I am considering returning to a DMT in the future, now isn’t the time for me. It is important that you understand that I have consulted my MS medical team on the subject, and they agree with my reasoning for not taking meds at this point.
Why Take Low-Dose Naltrexone?
Why, then, did I first consider, then decide, to take a medication for my MS that isn’t approved for use in MS? The answer is rather simple: I’m not taking it for MS. I’m taking it for one of my symptoms of multiple sclerosis. While many taking the med think of it as an alternative treatment for MS, there is no current evidence that it changes the course of the disease. I see LDN as a symptom-management medication. The symptom I was looking to treat was not a physical symptom, but rather a quality of life symptom. I was having a hard time coping with what multiple sclerosis was doing to me and hoped that LDN might fill in some of the deeper (and more frequent) valleys I was experiencing.
How I Managed to Get LDN
It wasn’t particularly easy for me to get a prescription for LDN, nor was it a simple matter to get the Rx filled once I convinced a trail of doctors of my methodology. While my MS specialist in the United States was onboard, my GP here in Ireland didn’t want to prescribe it without my Irish neurologist signing off first. She, like me, doesn’t see LDN as an MS disease-modifying therapy, so it took some convincing as to exactly why I wanted to use the medication, if not as a disease modifier. Once the script was written, it was up to me to find a chemist (pharmacist) willing and able to compound the right formula for me. I was fortunate to have a local chemist willing to dust off the technique and grind, scale, and put into solution the correct dose of the drug.
First Side Effect: Peculiar Dreams
So, half a year on, what has my experience been like? First, know that I was very (read likely overly) cautious in titrating up my dose. naltrexone is a medication primarily used to manage drug and alcohol dependence. In those cases, it is given at a significantly higher dose than the meager 4 milligrams (mg) I was targeting as my final dose. Each week for two months I increased my dose of the medication by 0.5 mg, eventually to get to 4 mg. I used the period of increase to keep close track of any changes I might feel. Until I reached 2.5 mg, I didn’t notice any changes at all — good or bad. Once I got to 3 mg, however, I noted the commonly reported side effect of rather peculiar dreams. These weren’t “bad” dreams. Rather, they were out-of-the-ordinary (for me) dreams, seen in letterbox fashion (like the wide-screen versions of films when shown on television). I still have noteworthy dreams, but I guess I’ve just gotten used to them after six months.
Second Side Effect: Flattened Emotions
As to my coping, that was a bit more of an issue. It could be said — and was said by my wife, Caryn — that I may have been uncharacteristically snappy for a few weeks as I got used to the effects of my final dose. I also felt that while my emotional troughs were a little less deep, the good parts — the peaks — were a little less high. It was as if the waves of my emotions had been squashed, both bottom and top. It wasn’t that I didn’t find joy in the good things, but rather that I wasn’t feeling quite as good about the good stuff as I knew I should be.
The Payoff: I Feel More Balanced
This, too, passed, and I’m very glad that it did. I think it was only because I was hypervigilant as to any and all changes in mood that I noticed these things, as they all passed (save the dreams) within a few weeks. Now I feel like I’m coping with the difficulties (MS and otherwise) a little bit better than I was a year ago. My multiple sclerosis continues to progress. LDN hasn’t stopped that. But I feel a little bit more balanced, and we all know that we need our feet and our wits about us if we’re going to keep fighting the good fight against MS. Wishing you and your family the best of health. Cheers, Trevis
