I'm about six weeks into my LDN trial and well overdue for an update.
I'm still trying to find the right dose, which is not unusual with this drug. General consensus is that most people find it useful between 3-4.5mg but you need to start slow. I started at 1mg and until a few days ago worked my way up to 4mg. I've since dropped back to 2.5mg but haven't yet settled. Changing a dose is based on the usual side effects versus benefits equation, with the additional factor of the body coming to terms with the changes, so you have to give it some time to sort itself to a new equilibrium, or decide that it either won't, or the new equilibrium is not somewhere you want to stay. One of the primary effects of the drug is allegedly to stimulate the immune system to flush out deep-seated infections, so you have to decide whether you feel terrible because your immune system is doing good, or if you feel terrible because you feel terrible and should stop what you're doing. Feeling terrible aside, you need to decide if the positive effects of pain relief are still working or might benefit from a change.
On the good side it's clearly helping with the pain as I've stopped routinely taking codeine, amitriptyline (Endep), Valdoxen and Cymbalta. I pretty much suspended paracetamol for a few weeks but have had to take the odd dose here and there to manage muscle soreness and arthritic pain. TBH it hurts quite a bit but I've got to give my liver a bit of a chance to recover. I dropped magnesium from 450mg down to 150mg but have since picked it back up to 300mg to manage cramps and shakes. I dropped Vitamin D as another favour to my liver. Previously it was necessary to keep all kinds of pain under control lest they spark the nerve pain of fibromyalgia. For a good few weeks I was able to put up with the non-nerve pain and stayed free of nerve pain. It's still mostly under control, but not quite as obviously so. Still, the weather has been awful and I hope things will warm up soon. Last week at hydrotherapy I most definitely overdid it, so that contributed to the general creakiness. I've a blood test next week and it will be interesting to see how the needle feels, given the almost miraculous reduction in pain from the last couple of tests.
Also on the good side was a remarkably unremarkable period where I not only didn't want to kill anyone, but wasn't crying in pain from the full flare I always got every month. Even my skin was clear. Sadly the second hasn't been so good, including some rather spectacular zits the like of which I haven't seen in years. Whoa. It would seem that the hormones are still finding their feet. Must remember it's still a huge improvement.
At first the initial side effects were all related to digestion, but that appears to have mostly settled itself. I'm most pleased by the drop in appetite and craving for sweet things and cheese that was the very much hoped-for result of dropping Endep. It's possibly I've lost 5kg so that it wonderful. I can actually see that my top spare tire has deflated slightly.
The bad news? Fatigue. Yes I already had Chronic Fatigue Syndrome (CFS) which apparently has been re-dubbed Exertion Intolerance Syndrome Or Something. I thought for a while that my more conspicuous fatigue on LDN was due to me doing more with reduced pain, or the fatigue was just more obvious relative to pain levels, but no, it's a known side effect of LDN and my biggest problem at present. Not helping is the LDN being a known disturber of sleep, and the fact that several of my ex-meds helped me sleep. I'm left with Stilnox, which works less effectively with LDN. Yay. Taking them at least an hour apart helps, but it does make Every Single Night an exercise in clock-watching. Most nights I try to get by with just half a tablet but if I'm completely awake at 2am-ish and desperate for some shut-eye I'll take another quarter or half. TBH I feel like I haven't had a decent night's sleep in at least a month, but that can't be true. TribbleJ has developed a new habit of poking my face on random mornings, presumably because my morning schedule has shifted, but he does sometimes wake me up just when I feel I've finally gotten to sleep again.
So, 9pm is LDN time, which inevitably includes a salty snack of some sort to defeat the incredibly horrible taste of the stuff. I'm getting through a lot of olives and Vegemite. Some people take it in the morning to avoid sleep disturbance and I eventually tried that for a day. Trying anything for just one day is pretty much useless, but I felt so unremittingly awful I couldn't bring myself to continue the trial. Yes, that bad. Maybe I'll try again some time when my calendar is clear and my courage is high.
Other options include skipping the odd dose which I've done just the once I think, but it's recommended in the long term as a way of keeping the body responsive. It's not quite the same mechanism as drug tolerance, but the result is pretty much the same in the end – your body gets used to it.
So, where am I now? I'm tired. I had five says of severe fatigue in a row before I dropped from 4mg back to 2.5mg and recovered a little, maybe overdid it again, then got tired-but-not-quite-as-tired again. Hopefully tomorrow I'll be able to scrape up the spoons for Hydrotherapy #19-in-a-row. Every four weeks the pool schedule and mine are such that I only get a single window of opportunity go for that week, and it's Friday at 4pm. I hate those days. I currently hurt, but I reckon most of that is weather plus over-exertion last week in the pool followed by a long stretch of near immobility. Bah.
Around the 3-4 week mark on LDN I was very impressed but still cautious – when I started Valdoxen I had six weeks of working back to near normality but it was never as effective again and I was bitterly disappointed. Now the LDN has definitely lost its would-be wonder drug status but it's absolutely one of the best ones I've ever taken and brought me back from several types of brink. I'm not yet finished with the tinkering so fingers crossed I'll get a bit of energy back. If my next liver test shows further signs of improvement I might treat myself to some pain relief. And Spring will spring again.