Lupus and Medications
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.
I am so glad that Tgal wrote this post because I wholeheartedly agree with everything that she has said. As many of you know, this site was started because of (and in memory to) my daughter who, sadly, lost her life to this disease. Also, as many of you may know, one of the things that I am adamant about is that we take our meds. My daughter's health decline began when she stopped taking some of her meds in an effort to try one of the "so-called" alternative cures for the disease. Just as Tgal mentioned, the removal of her medications caused irreparable damage to her heart as her disease was going untreated. This damage then, in time, caused her heart to just stop - suddenly and unexpectedly at the young age of 24..and she passed away.
So, like Tgal, I am very adamant about us taking our medication as prescribed. Tgal has made some excellent points and I do hope that you all understand that her post is an effort to educate as well as assist each of us in doing what is best to manage our disease.
Again...Thank You Tgal
Peace and Blessings
I want to thank both of you, reminding me (us) to take our meds.
As many of you know, I had to stop MTX injections due to very high liver enzymes. The only meds I am allowed to take are Mobic and Flexeril in moderation.
Even though I was forced to stop the MTX, I already found, that the Lupus or/and RA have gotten worse. I have alot more pain and my fingers look bend and bony nodules are sticking out.
I was supposed to give my liver a rest and since the liver enzymes have not gotten better even without the MTX, I have not seen my rheumy in four months.
But a few minutes ago, after I had read your post, I immediately picked up the phone and called the nurse at the rheumy office, to ask her what my blood test results were from last friday. Usually they call me with the results on monday, but not this week. I am waiting for her to call me back and when she does, I will make an appointment. Something has to be done, I can't go on without any meds, any longer. He is the doctor, he is going to have to think of something.
I had let it go on for to long, but your post woke me up.
I also need to be tested for sjoegrens, my eyes and throat are very dry.
This is an excellent post Mari, thank you for taking the time to put it together!
Originally Posted by tgal
Thanks for this post. I above all know how it feels to be so tired of taking all these meds. I started taking them at 27. I'm going to be 64 in a few weeks
I take 8 in the am, 1 in the afternoon and now I have to take 9 at night. I just added an anti seizure med today.
I hate taking these meds and sometimes slouf off. I paid for it the past3 months so I'm here to say. Beware of being lazy in regards to your meds.
They are important to your wellbeing
Thank you for your post. I am a newbie and have never taken any meds in my life except for a multivitamin. At first I was worried about taking a medication for life (plaquenil). Now, I realize that is nothing....I counted 6 daily meds, one of them three times a day for my current pericarditits flare. How did I go from no meds to 6 in such a short time and I still don't have relief yet? Well, I need to try and work out which "cocktail" of polypharmacy is going to work for me and try to accept it. The side effects haven't been unbearable yet, so I'm trying to embrace this new lifestyle.
By the way, does anyone have a good app for keeping track of meds? Especially on a droid phone?
Wishes of restful peace to all!
"Beware of being lazy". Oh what a profound comment that is! The internal fight at times is difficult but boy do you pay for the "laziness" when you let it win
Originally Posted by Nonna
Ohh Chesterwin! What a fabulous idea! I always say "there's an app for that" but it never occurred to me to look for meds! I am constantly thinking that I am forgetting a med I should be taking. Not forgetting it at my house but not getting one refilled so I have one missing! I have lists for everything and even a whiteboard in my kitchen so I can keep up with daily events. An app would be perfect! I will look into that.
Originally Posted by Chesterwin
I understand that going from no meds to this smorgasbord seemingly overnight. It is tough. There are days (as nonna mentioned) where you just hang your head and say "I don't wanna take them!". Struggle through. Find the ones that work to get you out of the flare and get your inflammation down and hopefully you can go back down to only 1 or 2 a day (maybe even none if you are really lucky).
Thanks for the app comment! I am going to check that out now!!
PS I found one called RXmindme that looks really good! I have an Iphone but it may very well be on the Android platform as well
I went to my first rheumy appt today and he's given me Plaquenil. I read the leaflet he gave me too and read "effective in 60% of cases" and thought...why the friggin hell should I bother? Really. I already take 2 different meds for Bipolar, then on top of those I take thyroxin for hashi's, and a cholesterol lowering medication...and now plaq. I know its not many compared to some but I do get pissed off. I was thinking I don't seem ill enough to have to take all of these meds. I often wonder if I'd just be better off without them. But probably not, esp not without my bipolar meds!
But thanks for reminding me/us how important it is. I'll take them, even though my first one has made me feel sick. Bleurgh xx
Plaquenil is a really good first line drug. It takes several months to completely work so don't expect miracles tomorrow but for most of us it really does help
Originally Posted by Shine