I know from time to time, this issue keeps coming up about taking the drug company or
doctors to court for the effects the steroids have had on various readers.
I had followed up not that way, but did contact the FDA. I was thinking that
really the incidence of how many of us get steroid associated AVN might be much higher
then they figure it is. I was quoted about 11% of those taking steroids get it now
they figure. But there is no reporting agency that the doctors have to report cases
to, so no one really knows!
I know that you can as a consumer, report to the FDA any adverse side effects from
drugs. It might behoove all who have steroid associated AVN, to report the side
effect to the FDA. Who knows? It might result in the labeling being more
definitive towards the cause and effect. I know for certain that in one drug
reference I have for nursing, it is not even mentioned as a side effect except when used
injected directly into joints. We all know that most of us end up getting it not
that way, but from oral and/or IV usage from steroids.
So I wrote to the FDA. It is now possible to report all your findings via the
I see it as the only way that the world will get the notice that steroids
can cause this effect it does to so many of us. Who knows how many of us are out
there? It is just like our duty to vote, so too is it our duty to report the effects
we have suffered from particular drugs. The medical community is not reporting this on a
routine basis they don't have time. They have too much other mandatory reporting,
they don't have time for this sort of thing, so it just goes on unreported and unnoticed.
The labeling for steroids was set up years ago in the 90's and has had
very few changes at all ever made to the labels. Just last year they amended the labeling
of Didronel, stating that it is recommended to take it when you are taking
glucocorticosteorids. It lessens the risk you have of developing osteoporosis.
But they were not able to get the comment posted to the real place it needs to be, on the
label of steroids. It is only by incidence that a doctor would even know to prescribe
Didronel concurrently with steroids. We don't know if it has any effect at
curtailing the rate of AVN cases appearing. It was proven however to be effective in
reducing the number of case of osteoporosis, which is not the same disease as is AVN (Osteonecrosis)
So I hope, that any of you that seem to feel you have suffered from the
use of steroids, will take the time to go to this web site and let the FDA know what
happened to you. I really feel it has to happen at a grass routes level to make it
known. Many of us would have still taken the steroids had we know the possible
outcome, but at least if we had been informed of the prevalence of this occurring, we
might have felt like we all made an informed choice to proceed with the steroids.
Gads, I have had now 8 joints affected, and now have cataracts attributed
to the steroids as well. I just wonder when it is going to stop?
M. Susan M