EXPERIMENT: Is baclofen an optimal default therapy for MND spasticity and clonus?
Baclofen is the first-line drug of choice to treat spasticity (next comes tizanidine). I was initially prescribed it almost at the drop of a hat, because “it may take the edge off your clonus”. It didn’t. But it did make me a little tired, which is a very common side-effect.
Baclofen seems to be beloved by neurologists – but less so by Clinical Care specialists who actually see what it does. Personally, I’m now far more cautious of it than before. I’m not at all convinced that it should be a first-line defence. Just because it’s been around for decades does not mean that the side-effects are necessarily worthwhile. What’s more, a targeted treatment such as Botox may be a far better option.
Baclofen has a short half-life of only two or three hours – in other words, it wears off so fast that every few hours you’re only getting half the benefit. [Tizanidine is even worse for that.] Also, you have to carefully titrate it (gently increase or decrease the dosage) if you’re to avoid potentially even more unpleasant side-effects than normal.
I experimented for several months with 30mg a day. I found that if, as is typically recommended, I took that in the form of one 10mg tablet every eight hours it was hopeless because the effect very noticeably trailed off then shot up again. The solution I came up with was to take a half-tablet every four hours (which involves waking in the middle of the night). This evened out the levels of drug in my system sufficiently that I was no longer aware of the variation.
I experimented for one month with 60mg a day – one 10mg tablet every four hours. The very common side-effect of general tiredness was far more apparent at this dose. Far worse, however, was the very noticeable loss of muscle tone throughout my body. My arms (which at that stage were still reasonably strong) became far weaker on the increased dose. When I titrated down again to 30mg, my arm strength quickly returned.
I very briefly experimented with the 90mg a day proposed by my (then) neurologist at UCLH. The side-effects, in my case, were substantial. The overall muscle weakness was unacceptable. But, remember, muscle weakness is not a side-effect of baclofen. It’s the primary effect. It is what baclofen is for. That’s what muscle relaxants do.
This worries me. If MND patients with spasticity (which is basically a symptom of Upper Motor Neurone damage) are routinely prescribed a muscle relaxant (baclofen or tizanidine) then most patients will just dutifully take it, unlike me who – with the full support and oversight of my excellent GP and MND-Coordinator – experimented with increasing and decreasing the dosage over sufficiently long periods to be meaningful. That suggests that most patients risk, for example, experiencing weaker muscles and assuming that the weakness is caused by their deteriorating condition. And perhaps feeling a little miserable as a result.
Maybe their weakness is caused by the MND. Maybe it’s the baclofen. In my case, it was most definitely the baclofen.
I titrated completely off baclofen. During the day my spasticity is now managed (far more effectively than it ever was with baclofen) using a combination of ankle-foot orthoses, botulinum toxin injections, and propranolol. A few months after first trialing this experimental regimen I reintroduced a single dose of baclofen (one 10mg tablet) just before bed to help manage the occasional spasms throughout the night that were interrupting my sleep. The baclofen has very largely worn off when I get up again the next morning.
My advice, having conducted this experiment: If your neurologist insists on baclofen or tizanidine, and will not consider alternatives, ask them to explain why. They may have an excellent scientific reason. However, if you’re not comfortable that they’re giving you a logical and sensible answer then, if at all possible, fire them and get a better neurologist.
You do not need to share a neurologist’s level of expert knowledge to be able to test what they tell you against basic Logic. You only need Common Sense.