Posted by noa on April 30, 2004, at 18:49:22
In reply to Re: are these posts representative? » Camille Dumont, posted by TanyaJean on April 30, 2004, at 14:11:26
I agree that there should be full disclosure, of course. And better education.
When Effexor was first coming into use, I was more forgiving of MDs who didn't realize, and therefore didn't tell patients about or were surprised by the occurence of withdrawal symptoms--there just was not very much experience with this yet. I wasn't as patient with MDs I heard about who seemed to dismiss what people were telling them about SEs and withdrawal experiences, though. I believe docs need to be open to learning from their patients, and be openminded about reality possibly being different than what the med manuscript says. ESPECIALLY with these relatively new meds, etc.
I did see it more as an omission of the manufacturer. But even then, I don't know what doses they were doing their large scale studies on and how much data they had early on.
But now that there has been a decade of widespread use of this med and it is clear that there is the risk of withdrawal symptoms, I do find it irresponsible of MDs who don't disclose this, and even moreso those MDs who don't believe their patients when they say they are experiencing them. And, of course, if manufacturers still try to dismiss real people's experiences.
I did find out the hard way, too, like Camille--initially by experiencing what happened when I dealyed my short-acting Effexor even by an hour or so. But I told my pdoc and he listened. Then when I switched to XR, which was better than the short acting for this very reason--ie not so dependent on dosing at the exact precise minute, we discussed the need to be regular with the XR every day because of this, even if there was more leeway in terms of exact dosing time. I did have one really awful experience when I ran out of the med and therefore missed two days and it really drove the point home for me in a BIG way. I made sure to tell my pdoc about it at the next appointment, and he validated what I'd experience and we talked about strategies if I should run out of or forget my med again (in that case, by the time I filled the scrip it was well into the second day. I had begun to feel not so well by the night of the first day but not awful. Since I dose in the morning and have difficulty with sleeping from this med, I'd made the decision that it would be too late to take it the day I got the scrip filled, because of the potential of total interference with sleep, only I realized later on that night, and very much so into the next day or so that it would have been far better to just go sleepless than to experience the malaise of withdrawal).
BUT, as I said before, I don't see this as a need to call for the med to be withdrawn. Better education, yes. Fuller disclosure, yes. MDs who can help educate patients how to use this med for best outcome and who know how to help patients deal with SEs or withdrawal if they experience it. YES. But dumping the med and making unsubstantiated claims about the extent of damage? No, I cannot agree to that.
But I do understand the frustration and anger and need to vent. I just wish people would find a way to do that without too much sensation.
poster:noa
thread:1016
URL: http://www.dr-bob.org/babble/20040429/msgs/341946.html