Good morning everyone,
I have been considering writing this post for awhile. We have so many new people and there have been so many posts lately fearing the medications that I really feel strongly that some things need to be said. I think the majority of us try very hard to bring comfort to those that are just getting a diagnosis. This is a wonderful thing but sometimes I think we need to tell the hard, cold facts.
I know most of us don't want to take meds. I know the warnings that are required to be placed on our medication, common and possible, are scary. I also know how tempting it is to try and find "another way" to deal with this disease and not take the medication. It is this mindset that has caused me to write this post.
As bad as the medicines are, Lupus is worse. While the medicines "may" cause issues (and some will) please never doubt that the effects of this disease can be worse. Left untreated this disease can and will attack your body in ways you can't even imagine. Left untreated this disease can destroy your kidneys, lungs, heart, central nervous system and any other part of your body. Left untreated this disease can take your life.
I hate my steroids. I hate my MTX. I hate my seizure meds. I hate having to take 9 meds a day (I alternate between 9-12). The meds make me fat and cranky. They put me at risk of having other physical issues but the alternative is to let the Lupus attack me with nothing to slow it. Like the rest of you I wish we had better choices. Sadly we don't. Too little time has been spent trying to find cures for this disease and we, as a community, need to make more noise so we become important. Until that happens though, we must begin to understand that the single most important thing is to get the disease under control using the few tools that we have. The earlier you get on the meds and stop the inflammation the less damage this disease will do to you. We say all the time that this disease is no longer a death sentence and that is very true however it CAN be a death sentence if left untreated because we are scared to put on weight or because the leaflet in the package says it may cause cancer. While we must be our best advocate we all must take an honest look at this disease and understand just what it can do if we do nothing. People often ask what I wish I knew early on that I didn't know. I seldom answer that question because the answer for me is "Nothing. I am glad I didn't know how bad this disease could be".
Please understand that I am not trying to scare anyone. I am not telling you to take medications that make you sick or that you and your doctor decide are not worth the risk for your particular situation. I am simply saying that we must get to the point where we are more scared of what this disease can do than we are about what the medicines can do. This disease can be controlled but we sometimes have to make hard choices to do it. I am simply trying to remind everyone how dangerous this disease can be if we fail to be as scared of it as we are of the medications.