RxISK is not all about bad news. We ask anyone who is having a problem on a drug to think of a possible use to which this problem could be put. We also want people to keep alert to anything they notice after starting a new treatment.
It is entirely possible that the right set of observations could lead to a Nobel Prize, or might allow someone to take a use patent out on an old drug or might produce a treatment that would save someone else’s life. The best way to discover new drugs is to look very closely at the full range of things that are happening on a drug already on the market.
Come in benztropine
Which is where benztropine comes in.
Many people being treated for Parkinson’s disease or the Parkinsonian side effects of antipsychotics and many nurses of doctors treating them all the way back to the 1970s will know about benztropine – perhaps by its trade name Cogentin. It was one of those drugs everyone knew by its trade name. Technically it’s an anticholinergic drug.
Once it went generic, several companies produced versions of it. There are also many other anticholinergics out there such as procyclidine. The market for these drugs must have shrunk a lot in the 1990s when we stopped prescribing antipsychotics in doses 50 to 100 times what is used now.
So I wasn’t completely surprised when I went to check it up in the drug directory a few weeks ago and found Cogentin was no longer there. Googling it made it clear it had been removed from the market a little over a year ago. Removed in all European countries.
When is an anticholinergic not an anticholinergic?
Except this is not likely to be the full story. A team at Scripps Research Institute a little over a year ago reported that benztropine had some extraordinarily interesting properties – nothing to do with its anticholinergic actions.
They were studying multiple sclerosis. This is the disease that medical students find most confronting – the one they hope they will never get. It’s an horrific and degrading destruction of nerve cells that strips away dignity slowly over years, confining its victims to wheelchairs and worse.
The problem is that some kind of inflammatory process attacks and destroys the protective myelin covering around nerves. Most treatments aim at suppressing this inflammation. The latest treatments are high cost monoclonal antibodies that come not only with a price tag of tens of thousands of dollars per year but also a high cost in terms of lethal side effects.
But another aspect of MS is that something goes wrong with the normal repair mechanisms. When myelin breaks down in the rest of us, it is usually repaired by oligodendrocyte cells. But in MS this group of cells are not present or doesn’t swing into action.
Taking a different approach to everyone else, the Scripps team screened banks of old drugs to see if anything has an effect on oligodendrocytes and to their surprise found that benztropine did. Tested in animal models of MS, benztropine reversed the defects found in MS and drastically reduced the amount of anti-inflammatories needed. No other anticholinergic does this – so this is nothing to do with benztropine’s anticholinergic action.
The disappearance of Cogentin
Given this, it’s perhaps not surprising to find that around the time this research was first heard of Merck removed Cogentin from almost all markets – even China. The suspicion has to be they and others spotted a fortune to be made by introducing a variation on Cogentin and a fortune to be lost if the sales of Monoclonal Antibodies dropped.
Some forms of benztropine are however still on the US market. The Land of the Free and the Home of the Brave may also be the House of Hope.
What we need to find out is whether patients taking benztropine are less likely to get MS, whether patients with MS who go on benztropine have noticed any difference in their MS and whether this treatment is useful for anything else.
One of the surprising aspects of all this though is that its apparently not hot news in American MS circles. It may be the fact that the studies reported so far have been in animals – but in fact benztropine is pretty safe as these things go. And its available – in the US. I have to say if I had MS I would begin taking it in the morning.
And if I had a relative or friend outside the US with MS, I’d want to get benztropine to them. But it’s not clear how this can be done. Medicines put in the post are liable to be confiscated in the absence of a prescription. So another question is whether there is a legitimate way to get a medicine like this from the US to someone living elsewhere.
Input needed
We need:
- comments from anyone with MS who is using benztropine and figures its making a difference to their MS
- comments from anyone who is using benztropine and figures its making a difference to something.
- comments from anyone outside the US whose benztropine was stopped and finds they have developed new complaints since it was replaced by another anticholinergic.
- comments from anyone who knows the inside story on benztropine’s removal
- comments on how to get benztropine legitimately to people living outside the US
There is a real chance for someone here to win a Nobel Prize, get to take a use patent out on an old drug or just save someone they love or others from an awful fate.
Johanna says
When I went to look up benztropine on Drugs.com, the leading US commercial website for drug information, my screen immediately filled up with MS drug ads! Nothing about Parkinson’s, and for sure nothing about treating the side effects of antipsychotic drugs. Hmm.
All the news reports emphasize that NO ONE should try this drug to treat humans yet. After all, it can have (OMG) side effects! Including some that “mimic MS itself”, one reporter advised: drowsiness, blurred vision, dizziness, confusion, and even possibly psychosis at very high doses.
Well, that’s nothing to take lightly. But I couldn’t help but compare it to some of the drugs given to MS patients simply to manage symptoms. That includes Provigil to combat drowsiness – a stimulant that can cause dizziness, confusion, blurred vision, depression, anxiety, hallucinations, mania and rare but occasionally fatal skin rashes. And the side effects of MS drugs thought to actually be “disease-modifying” are even more serious.
To give some idea of how old and well-known “Cogentin” is, and how freely it was once used: at one point in the seventies my local university Student Health Center was actually giving out Haldol drops to students in non-life-threatening emotional distress. Along with the Haldol came a bottle of 30 Cogentin tablets, “in case you start drooling or have a stiff neck.” Just pop a few of these, kid.
Granted, this was way TOO loose an attitude – and the bigger problem was the almost criminally loose attitude towards Haldol and other neuroleptic drugs. But Cogentin at least has been used and studied for sixty years. And nobody started hyperventilating about its dangers, until it became a potential rival to blockbuster biologic drugs costing thousands of dollars a month.
Rob Purssey says
It’s available in Australia. I’ll send to MS groups here, and invite responses. Will post what comes up. Thanks for this great information.
FRANK DING says
Hey Rob, I can’t find benztropine available in China, and I would fly to Australia if it is really available there. I want to make a try by myself!
Gary says
Please give me more info thankyou
ahmed says
hellow .. iam a pharmacist from egypt …and very interested in benztropine …..my wife has ms …and i use it with her for 6 months ………i found no change …may be it is good news ….because it is a progressive disease ….she is pregnant now ..and i will continue the benztropine with her after we get the baby …and we will wait and see
Ayman says
is there any new news about benztropine ?? did u continue using it for ur wife
or have u stopped ??
and what was the dose and the commercial name in Egypt is it congenten ??
hope that ur wife is getting better ya abo hemeed
Leonie (For Shane) says
While searching RxISK for Parkinson’s medications I came across this blog on Cogentin. Not sure if this has any relevance –
My brother (who died by drowning in 2010) had epilepsy. I have his medical records from one of his many trips to Beaumont Hospital in Dublin. He was on a number of anti-seizure medications: Tegretol, Phenobarbital, Topramex, Epanutin and also Cogentin, which I assume was used for the adverse effects of the epilepsy meds. He had, not surprisingly, all the appearances of a person suffering from Parkinson’s disease, tremors and shaking legs, among other awful effects such as suicidality and hallucinations.
He lived till age 42, yet despite regular changes of dose, medications and even brain operations – the seizures never once stopped or reduced in number. Polypharmacy at its finest! I’m only surprised he lived that long with so many drugs in his system. Anyway, Cogentin was part of the picture.
Sarah says
I want to preface this by saying I have not been diagnosed with MS. My brain MRI showed two foci in the pre-ventricular region, one in each hemisphere. These areas did not light up with contrast dye. They would only do the cervical spine, which did not show any spots. I was 38 years old and have been having multiple symptoms since 26.
Less than a week ago, I had to leave work early due to a sudden onset of double blindness. I went to the ER and after a whole battery of tests, the doctor decided to give me IV Benadryl and IV Cogentin. I’d say about three hours later, I noticed when the doctor woke me up, my double vision was completely gone and has been since then. I have an appointment with a Neuro-ophthalmologist in a week.
PollutiontherootofMS? says
Hi Sarah, How are you doing these days, were you ever diagnosed with MS or something else. Glad your vision rebounded, how is your vision these days, did any other issues pop up? I am Curious about you, my entire family has MS. I am curious about Cogentin ?