ok, I had this really awful rash, derm said its probably more discoid, did a biopsy and its actually SLE, not what I was expecting to hear, I questioned the results as I've never had a positive skin biopsy for SLE, discoid lupus yes. He says my lupus is obviously much worse than before as a positive in the skin for SLE is rare, I've never heard of such a thing getting a 2nd opinion. He says he's not comfortable treating me as my lupus is "obviously very complicated", no really what does he think lupus is?? My dilema is I've got the rash under control, its not hurting anymore and has stopped spreading, I realize what's going on is most serious, all my major organs are already involved, including kidney and CNS I've got to wonder if undergoing anymore toxic treatment would be of any real benefit, I quit all the meds over a year ago and until recently I wasn't any better or worse, I'm really reluctant to put myself through it yet again at some point I still believe while I'm uncomfortable, I'm still better off without all the meds, although I have to admit the pain especially the headaches I get now are pretty intense I might consider comfort care with pain meds only so at least I'm not in agony all the time but even that comes at a price. Has this happened to anyone else? what did you wind up doing?
The purpose of medications is not to cure lupus but to PREVENT major organ damage from occurring. Once the damage occurs it is irreversible and can ultimately lead to things like dialysis for kidney failure as an example. The meds may have side effects but the effects of major organ damage is worse- you have to pick your poisons.
My choice was to take the medications Many years ago I was headed for dialysis and a kidney transplant and it is ONLY because I braved the medications, and yes all their side effects, that I am still alive and still dialysis free. I also had CNS lupus and it is ONLY because of the medications that I am pretty much headache free - able to get up and about not bedridden or puking my guts out all day long. Are the medications fun?? No but much easier to live with than the major organ involvement.
I explained it this way to my son. Putting too much chemicals in a pool is a bad thing. Normal pools don't need that much to stay 'healthy'. However, a green pool with bacteria and algae growing in it isn't healthy at all. In order to get it healthy, lots of harmful chemicals are used that would be bad for a 'healthy' pool. When the pool becomes healthy, the chemicals can be scaled back. My point being that YES, putting chemicals in our bodies seems counter-intuitive. However, our bodies are not functioning properly. We need these chemicals to push, nudge, and shove our bodies towards healthier behavior. If we are lucky enough, we can perhaps scale back from taking so many things. If not, well, at least we are working towards getting there.
Please, be careful not taking meds. It scares me silly to hear the position you are in. Take care of yourself hon. ::hugs::
I know I picked my poisons for a lot of years, after they discovered the organ damage, some of the meds led to more damage, the real kicker is my liver is bad and really causes havoc with most medications, as normal doses for others could put me back in liver failure I know what you're saying, but I've come to complete stop trying to decide if its even worth all the side effects and being sicker than I already am. I was doing ok, not great but ok, even if I do the drug therapy again, its very toxic. we already know the damage to my organs is permanent, to me it would be nothing more than buying time, its not lupus that kills you its all the damage and complications that eventually get you. If I didn't have all the extensive damage I would most likely gladly take anything to get better, but at some point I've come to realize its pretty much downhill from here on, with the brain and kidneys both going, I really have nothing else to lose to this disease. I've read a lot of the discussions on here, I admire people who have the courage and strength to keep fighting, most of them are younger who have most of their lives ahead of them, they're getting the best medicine has to offer, when I got this there wasn't much known about it and even less on how to treat it or if the treatments would make it worse. My first treatment was experimental gammaglobulin infusion treatment, I went bankrupt to pay for it, within a year my liver failed for the 2nd time, the treatments didn't work, that was in 1988, my kids were little, I had been divorced a couple of years I would've sold my soul to stay alive, I was all my kids had, I latter did what the dr. laughingly called a cytoxan cocktail, it was a strange mix of immunosuppressants cytoxan,methotrexate and something else, it made me very sick, I lost a lot of weight spent a good deal of time either in the hospital or in bed, after awhile I did go into remission, and so it went for the next 15 years, doing well only to end up back where I started,every time, in 01 I opted for a very aggressive round so I could make it to chicago for my daughter's weddings, I made the wedding, the price was pretty high but worth it, both my daughters got married that year, even with the meds on board it was pretty dicey trying to hide how very sick I really was, I've never gone back into remission, I've been in a constant flare to one degree or another and always on a lot of medications, I was really excited a couple of years ago when benlysta came out, it was the first new drug for treating lupus in probably 30 years, my heart sank when the rheumy told me I wasn't a candidate for it, I was too far gone, too much damage and so on, about 3 months after that I was told I needed an aortic valve replacement surgery, that was a coupe of years ago, I'm not sure my time tables get jumbled up, to this day I've not been able to get medically cleared for the surgery, I most likely never will, in the meantime the mitral valve and triscupd valves need to be replaced too, I also found out I had interstitial lung disease, I think that's when I decided enough was enough I stopped all my meds, deep down I thought if I stopped all the meds, the suffering would finally be over, not only for me but my kids and family well once again the doctors weren't exactly right, I'm still here. I've got no one to blame for my newest predicament except myself, I'm not giving up, I just have a hunch that maybe sometimes the lupus has to win.
Good analogy!
Talencia said:
I explained it this way to my son. Putting too much chemicals in a pool is a bad thing. Normal pools don't need that much to stay 'healthy'. However, a green pool with bacteria and algae growing in it isn't healthy at all. In order to get it healthy, lots of harmful chemicals are used that would be bad for a 'healthy' pool. When the pool becomes healthy, the chemicals can be scaled back. My point being that YES, putting chemicals in our bodies seems counter-intuitive. However, our bodies are not functioning properly. We need these chemicals to push, nudge, and shove our bodies towards healthier behavior. If we are lucky enough, we can perhaps scale back from taking so many things. If not, well, at least we are working towards getting there.
Please, be careful not taking meds. It scares me silly to hear the position you are in. Take care of yourself hon. ::hugs::
It only wins if you let it I can go toe to toe with you on major organ damage- so be it but I choose to feel as well as possible for however long I live. So I control my disease and still have a productive enough life- had this disease for almost 50 years now- felt many times like you- "Why bother" but the tools are there (medications) so I use them.
hopeful said:
I know I picked my poisons for a lot of years, after they discovered the organ damage, some of the meds led to more damage, the real kicker is my liver is bad and really causes havoc with most medications, as normal doses for others could put me back in liver failure I know what you're saying, but I've come to complete stop trying to decide if its even worth all the side effects and being sicker than I already am. I was doing ok, not great but ok, even if I do the drug therapy again, its very toxic. we already know the damage to my organs is permanent, to me it would be nothing more than buying time, its not lupus that kills you its all the damage and complications that eventually get you. If I didn't have all the extensive damage I would most likely gladly take anything to get better, but at some point I've come to realize its pretty much downhill from here on, with the brain and kidneys both going, I really have nothing else to lose to this disease. I've read a lot of the discussions on here, I admire people who have the courage and strength to keep fighting, most of them are younger who have most of their lives ahead of them, they're getting the best medicine has to offer, when I got this there wasn't much known about it and even less on how to treat it or if the treatments would make it worse. My first treatment was experimental gammaglobulin infusion treatment, I went bankrupt to pay for it, within a year my liver failed for the 2nd time, the treatments didn't work, that was in 1988, my kids were little, I had been divorced a couple of years I would've sold my soul to stay alive, I was all my kids had, I latter did what the dr. laughingly called a cytoxan cocktail, it was a strange mix of immunosuppressants cytoxan,methotrexate and something else, it made me very sick, I lost a lot of weight spent a good deal of time either in the hospital or in bed, after awhile I did go into remission, and so it went for the next 15 years, doing well only to end up back where I started,every time, in 01 I opted for a very aggressive round so I could make it to chicago for my daughter's weddings, I made the wedding, the price was pretty high but worth it, both my daughters got married that year, even with the meds on board it was pretty dicey trying to hide how very sick I really was, I've never gone back into remission, I've been in a constant flare to one degree or another and always on a lot of medications, I was really excited a couple of years ago when benlysta came out, it was the first new drug for treating lupus in probably 30 years, my heart sank when the rheumy told me I wasn't a candidate for it, I was too far gone, too much damage and so on, about 3 months after that I was told I needed an aortic valve replacement surgery, that was a coupe of years ago, I'm not sure my time tables get jumbled up, to this day I've not been able to get medically cleared for the surgery, I most likely never will, in the meantime the mitral valve and triscupd valves need to be replaced too, I also found out I had interstitial lung disease, I think that's when I decided enough was enough I stopped all my meds, deep down I thought if I stopped all the meds, the suffering would finally be over, not only for me but my kids and family well once again the doctors weren't exactly right, I'm still here. I've got no one to blame for my newest predicament except myself, I'm not giving up, I just have a hunch that maybe sometimes the lupus has to win.
Yesterday was just bad all the way around, I'm going to just keep going as I have, I don't mind and it don't matter, I know there's people out there worse off than me, I'm always saying I must've really pissed someone off in a former life to get this one. It is what I make it, no one can fix it for me. I appreciate all the support every day is a new adventure, maybe today will be better. I am forever hopeful.