There is, and has only ever been, one FDA approved treatment for primary progressive multiple sclerosis. It’s called Ocrevus, and I’m taking it. Every other drug/treatment I have employed in the last 16 years was off-label, rogue, underground, unapproved, unauthorized, unofficial, shady, under the table, or any combination of these. I’m about to do it again.
A few days ago, I stumbled across this article about an over-the-counter antihistamine called Clemastine Fumarate. It met with some success in a Phase II, randomized, controlled, double-blinded trial for people with MS. Supposedly, it encourages the body to repair damage done to the nerve coatings known as myelin.
Could it be that simple? Could I treat my MS with hayfever medicine? Almost certainly not, but the risk is so low and the potential rewards so high, I’m going to give it a try. First, I had to figure out where to buy the stuff.
At the dosage they used in the trial, I would have spent thousands of dollars per year, even at discount pharmacies, to get enough of this drug over-the-counter. So, I contacted my neurologist and asked if he could write me a prescription. He did, and I picked it up yesterday, and it has a $10 per month co-pay. That’s a little better.
The likeliest side effect is fatigue, and I can confirm as much after only a day on these tablets. Like many cold medicines, it makes me sleepy. The good news — that side effect should decrease over time.
If I sat back and simply followed the rules, I would have a long wait on this drug. I expect the drug company will run a Phase III trial, and if it is successful, they will petition the FDA for approval. Those two processes—trial and approval—could easily eat up five years. I can’t wait five years. I’ve been down this road many times with treatments that hadn’t made it all the way through FDA approval, and I haven’t had much luck. But I’m desperate, so here I go again…