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Fatal Braaaain Disease.

Been looking up the next trial drug. Nothing new on my last lot of searches. I'm pretty sure it's Vedolizumab, they told me at the time but I'd clean forgotten and forgot where I'd filed all the bookmarks...but anyway.

From what I surmised when they first told me about this trial, and when I googled and pubmedded it the first time last year, it's to study a drug that they think is an improvement on a current drug that works quite well - except for the fact that the longer you're on it the more likely you are to develop a fatal brain disease.

(That original drug is natalizumab, marketed as Tsyabri and approved in Australia for MS, and elsewhere for both MS and Crohn's Disease. The fatal brain disease in question is Progressive Multifocal Leukenopathy. Tysabri was approved by the USA's FDA, then withdrawn when two people died of PML, then reapproved with strict safety protocols. But more people have since gotten the fatal brain disease, and even with management, there have been more deaths. As time goes by, it's starting to look as though your risk of getting it increases with your time on the drug.)

This is an attempt at a drug that doesn't do that. Cause fatal brain disease, that is.


The theory is that this new one is a bit more selective and only messes with your gut, not your brain. So it will be no help to people with MS who might be feeling ambivalent about treating their brain disease with a drug that might give them another brain disease (and moreover another brain disease that is more acute, sudden and fatal than the brain disease it is treating), but still theoretically good for people with Crohn's Disease.

And this trial is about finding out if they're right.

Well, I'm sure this means they are watching everyones' brains very closely for signs of fatal brain disease.

And given that they're watching it quite closely because of the whole problem with the fatal brain disease thing, I'm guessing that if there was a problem, they'd have pulled the trial.

In fact, they'll be watching super closely because it's the whole nasty business of the fatal brain disease that's motivated the development of this drug in the first place, and they are good and honest people in this worldwide multinational drug company who would not proceed for a moment longer if they found out that in fact, the new drug still carries the risk of fatal brain disease.

I mean it's not like the horrible Vioxx scandal a few years back, where drug company employees actively withheld evidence that Vioxx could cause sudden heart attacks, and got away with this for some time because no one(except for them) was actually even aware that it could be a risk so no one was looking and so no one was drawing a connection...er no. Everyone knows about the risk of fatal brain disease. Everyone will be looking. So jsut on the off-chance that a drug company is not full of ethical, decent people, there should be a lot of other people around who'll scream blue murder should I, or anyone else, go down with a fatal brain disease.

And hopefully their theory about why the earlier drug tends to increase the risk of a fatal brain disease is correct in the first place, so the development of the second drug has been done along the right lines.

Yes, that.


Back in 1979, my Aunty Kay(not her real name) was booked for a scenic flight over Antarctica, but it was cancelled on account of the Mount Erebus Disaster - the devastating crash in Antarctica of a scenic flight that killed everyone on board - just a couple of weeks before she was due to go.

She told Mum she figured it would be perfectly safe, as they'd surely be being extra careful now.

One can sort of see her point but then again...one can also not.


So. If I get a fatal brain disease, avenge my death willya?

Ta xx


( 14 comments — Leave a comment )
Feb. 5th, 2010 10:46 am (UTC)

So a fatal brain disease. That would be putting me off.
Feb. 5th, 2010 11:01 am (UTC)
Well, theoretically, there will be *no* fatal brain disease, so um yay...

I mean, imagine if I'd been on the trial for the first drug, when they didn't realise they had a problem with that fatal brain disease thing...

(And why yes, I am going to be saying FATAL BRAAAIN DISEASE at every opportunity until someone makes me stop.)
Feb. 5th, 2010 11:03 am (UTC)
Zombie delight....
Feb. 5th, 2010 02:43 pm (UTC)
I can only absorb that information, and pray you don't get a disease. Pray to the Cookie Monster because surely he's one of the more popular gods.

For some reason, my paranoid schizoid ex-neighbour is still on Vioxx. I tried to tell him about the problems that had been found with it - but it didn't go down too well given his paranoia (been fielding calls these last few days because he's recieved notification that he has a registered letter waiting for him at the postoffice and he's worried about what's in it). Gods know why his GP still has him on it. (And I wish he's just go get the damn letter)
Feb. 8th, 2010 08:28 am (UTC)
I guess he and his doctor have decided the risks are worth it. What sucks is when people don't know. Although it's probably very hard to convince him about anything..

Hope he has the letter by now.

Feb. 8th, 2010 05:31 pm (UTC)
Erk. Should ring him today.
Was getting lactose testing yesterday.

Got lots of blood tests done by GP last week - results today. I'm really hoping that I'm anaemic (after months of dairy/carb only diet). No other explanation for why I'm so tired, and sleeping 80% of the time. It doesn't feel like a crash - there aren't the neurological components. Can't sew/embroider. Too tired!

Tho pernicious aneamia runs in my family - my grandmother had it, and my father had to retire from English teaching in his mid forties because of it. If I've got it, I'll be really pissed. (Means blood replacement therapy coz that dere blood jus' can't keep hold of dat iron)
Feb. 8th, 2010 05:32 pm (UTC)
Yes- it's impossible to convince him of anything. And he gets periodically scared of the drs, and misses appmts and refilling his scripts - which is very frustrating!
Feb. 5th, 2010 04:34 pm (UTC)

But I will most definitely scream very loudly on your behalf if the Fatal Brian Disease gets you.
Feb. 5th, 2010 10:19 pm (UTC)
This antibody certianly appears to be more selective. I think it is a pretty impressive achievement, providing it suitably interefers with the normal crohns disease process.
Feb. 8th, 2010 08:23 am (UTC)
Oh yeah - if it works, it's really bloody clever.

And if it also helps reduce my fatigue, I may in fact reconsider my theory of me having two separate diseases.

(Except for the rising popularity of ideas about gut dysbiosis/leaky gut in both fields. Very unpopular when I was first diagnosed with Crohn's but apparently making a comeback, and getting popular among some of the CFS researchers that I do respect. Must look into this more at some point.)
Feb. 5th, 2010 11:35 pm (UTC)
No fatal brain disease for Ms Noodles please! though as you say, there shouldn't be. Ooooch.
Feb. 5th, 2010 11:52 pm (UTC)
Fatal brain diseases all round gaston!
Well I'm no expert but I think this whole lack of fatal brain disease thing is a good thing no?
And If I might remind you that the common hook worm has never been known to cause a fatal brain disease, Anemia yes...brain disease no. You could name yours "Chewy".
Feb. 8th, 2010 08:21 am (UTC)
Bugger the pony!
Chewy will be my special friend and we will be inseparable.

It is a good thing, I'm just hoping they got the 'no fatal braaain disease' model right.
Feb. 6th, 2010 08:44 am (UTC)
As opposed to slightly inconvenient brain disease-- with which one can lead a normal life, I'm told.

Yeah, drug trials. They can really set off some red alarm terms. I think the one I was in was "irreversible bone marrow damage". Also kidney failure, but that was reversible, just barely.

I wonder if this means you'll be spending alot of time in an MRI.

I hope all goes according to plan and you don't get fatal brain disease.
( 14 comments — Leave a comment )


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