New updates on CGRP meds

[Ricardo]

Dr. Lawrence Robbins of the Robbins Headache clinic recently came out with an article on the CGRP mononclonal antibody drugs such as Emgality.  He has been one of the biggest prescribers of these meds and to me, he seems like the most reputable, qualified doctor that we have in headache medicine right now.

Technically the subject of his article was not the CGRP drugs, it was more about the system that we have in place to get accurate info to patients about medications.  And he titled the article "The system is broken".  And he used the CGRP meds like Emgality as an example of just how broken the system is.

He says this because we originally were told that these meds were about as close to side effect free as you can get, but now we are seeing a very different reality.  He says that at this point we have close to 6,000 cases of serious adverse events, meaning that people either ended up with a life threatening condition or needing hospitalization.  He called this amount "staggering" and he also said it is the tip of the iceberg and that in reality, the numbers are most likely much much higher. 

And if you listen to the huge amount of patients that have had horrible reactions from these meds then what Dr. Robbins is saying makes sense.  Because you find that most of them have doctors that are not believing them when they report problems.  The only probIems noted in the original literature was constipation, so when people come in saying that they all of a sudden have crippling anxiety and their hair is falling out many doctors just blow them off.   I know when I tried to tell one doc about some of the newer information she called me a conspiracy theorist.  I'm sure there are quite  few others that have had similar experiences. 

So at this point it seems that it is on patients to save other patients.  We have known most of this info for close to two years now, so it's apparent advocacy groups and most medical proffesionals are just not going to talk about it.  Hopefully this will change when the meds come out with black box warnings, which is something that Dr. Robbins told me he expects to see happen with these meds

The CGRP monoclonal antibody drugs are an important option to have in our arsenal, but they pose a serious potential for harm if doctors are not aware of the side effects that can come up.  

And in all situations we need to be vigilant in our search for truth, even if we don't like it.  

Here is the article Dr. Robbins wrote.  

https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/

-Ricardo

[jon019]

....thank you for this Ricardo....monoclonal antibodies actually saved my life for another condition.....but it was a trade off, with long term consequences not fully revealed/discussed prior. i would (and might have to) do it again....but INFORMED consent this time.....

[Ricardo]

I'll admit, I have a bit of a fear that the attempt to increase trust on these drugs by not talking about and downplaying the risks could seriously backfire.  It doesn't matter how great the meds are for some, if they produce enough life threatening reactions there will be a push to remove them like they removed the Fen-Phen drugs.  

When public perception of the drug goes from "barely any side effects" to "it might kill you and people have known this for years but we won't talk about it" it gets attention.  If it happens too quickly it sets us up for a huge public backlash on these drugs and the people that have promoted them, and that sets us up for people calling for these meds to be taken off the market.

My humble opinion is that if we take things as it comes and admit science as it is discovered we end up with less of a "shock and awe" effect and we have less potential of a public backlash.   I encourage people and groups to reexamine their stance on this.   

 

-Brendan (AKA Ricardo)

[Pebblesthecorgi]

It always amazes me how new drugs get through the "rigors" of approval emerging as side effect free only to find out once in "the wild" to be problematic. Confirms that money talks.  On the other hand if we never had a new med to use everyone would complain the process is too cumbersome.  In the end Ricardo is correct, doctors and other providers need to LISTEN when patients offer serious complaints or concerns.  All medications have potential side effects especially if you are on other meds that alter your metabolism.  Thanks for the info!