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…
Thanks for being a pioneer! I anxiously await your reports.
Stephen, you're most welcome. I'll do my best to report out on any progress, or even lack of progress.
I was just Googling this yesterday to see where I could find enough Clemastine Fumarate to buy to meet thehigher trial dosage. I calculated that even if I could find it all in one place all the time, the cost at Walgreens was about $150/month – not too bad, but when it's all out of pocket, not so good, either. I didn't even consider going to my own doc to ask for a prescription (duh!!). I'll probably have better luck with my PCP as my current neuro isn't on board for alternatives. I'm making the PCP appointment today! Apparently it's a dandy allergy med to boot, but almost disappeared from the market in 08-09. Comments I've read on the Walgreens website said it was one of the best antihistimines people had taken. I figure I can kill two birds with one stone since I have hideous seasonal allergies down here in the hot, dry Sonoran desert, too. I can't wait to see where this little experiment goes. As always, I enjoy reading your blog, although I don't often comment. My bad!
Thanks for commenting this time. I wonder if you shouldn't be in the market for a new neurologist, one with a more open mind?
I read about this med. I sure hope it works, repair would be fantastic! Let us know how it goes. I do believe some ordinary meds can help MS if we knew about it
Thanks for being our friendly neighborhood lab rat (or is that lab mouse).
We will be watching and hoping for positive results.
From your friendly neighborhood "stalker"
Dee/OH