I need some help here. I quit all my meds last year, I did ok til I got this horrible rash that actually turned out to be SLE, which really surprised me, I had been in a flare for some time before the rash appeared I did a short dose of prednisone and a cream the rash cleared up, well since then a whole host of problems has besieged me, and everything is worse than it was a month ago. I've decided I only want to treat the lupus itself, not all the other stuff that goes with it. My doctor wanted to put me back on cytoxan I wanted to wait and see if once the rash got settled down if all the other stuff would quiet down as well. That didn't happen , I'm thinking if I can get the lupus under control the rest of the stuff will settle down again. I absolutely won't go back to the 28 different medications I was on before as that was just insane and I've proven even to the doctor I could survive without all the meds. My question is has anyone else just treated the lupus with like cytoxan and did some of your problem resolve once the lupus got under control or back into remission without taking a ton of medications? I see the doctor tomorrow, this has been keeping me up nights, I'm afraid I'll wind up on a bunch of medications again and just get sicker, I'm really besides myself.
Hi
You have a predicament. I've thought of quitting all meds. plaquenil is my only Lupus med I don't want those mouth sores again. I am on comadin but I guess I don't want another TIA or maybe a stroke. I take levothyroxin for hypothyroidism so I guess I really need that. High blood pressure meds. I guess I would be gambling on heart attack or stroke. VSL-3 , I don't want constant diahhrea. simvastatin? If I could exercise, Exercise?? I can barely get thru the supermarket!! Which one could I really get rid of??
Good luck with your Dr visit. Keep us posted
Cindy
The only problem with refusing your meds is that you don't know what damage is being done internally to your major organs. I am on numerous medications also but understand what each is for and opt to take them rather than run a risk. Like freightliner says without her Coumadin she could have a stroke Well once you have a stroke there is no going back- the damage is permanent and the damage this illness can cause can be far worse than the medications
Poobie
I agree . I think it can be dangerous to quit meds unless you know the consequences.
Cindy
The meds only treat the symptoms, if we can get the lupus under control wouldn't it stand to reason the symptoms would get better, we all know the damage to organs and body can not be reversed or fixed, and I for one have discovered you can live with substantial organ damage and not be on tons of meds, I was well aware of the consequences of stopping all the meds, the doctors tried the scare tactics and stern warnings, well so far so good no clots,strokes,heart attacks or system failures my argument to them was simply I've had all that happen with the meds, to that they had no response.. we will see what he says tomorrow, he's already astonished that I'm still alive, doctors I think sometimes just don't like to be proven wrong.
Lupus is not really a disease that you should quit taking the medication. I had a crazy doctor take me off of plaquenil and the lupus came back with a terrible flare that lasted about 9 months. It is just not worth it. Luckily I have no organ damage and I am doing pretty good at the moment, but you never know. If you were diabetic you wouldn't stop taking insulin. Taking pills is nothing compared to what many people must do daily. Maybe you just don't need so many.
I hope the doctor puts you on plaquenil today. It will take a few months to work, but you will be so much better.
Take care!
Problem is you don't know WHEN your organs reach the end of their usefulness I have severe kidney damage and can't feel a thing- however without my meds I would be on dialysis I'm a nurse- trust me you don't ever want to be on dialysis I used to run a rehab facility Trust me you don't ever want to have a massive stroke Optic neuritis- very few symptoms but you can go permanently blind with little to no warning The meds don't just treat the symptoms- they treat the underlying inflammation that causes the permanent organ damage Kinda like a diabetic saying I feel the same without my insulin- then in a few years has to have his leg amputated. So one year without meds and you are still alive and kicking is not a good indicator of what the future holds with this illness You could have a frank discussion with your physician about not taking so many meds - not sure what your 28 meds were- they certainly weren't for lupus And yes if you can manage the lupus many of your symptoms will be managed as well
I agree with everyone. Medications are important for different things. I take a lot and will continue to do so. I hope you will re-think about taking meds. Good luck.
I have 3 untreated autoimmune diseases( lupus, Sjogren's, autoimmune hep) that went untreated for years. Dx-ed 1988-1993. Kinda had a rep as a hypochondriac. When I became even sicker and very yellow, I went to the doctor within 3 months I had all three diagnosed and was in a major flare. And the meds made me feel better. The side effects of the meds is another discussion--and I have them. But, I also know that I can cause further liver, kidney, and heart damage if I go off of them.
It scares me when people say they've gone off their meds or they're even thinking about it. I do admit there are days that I have taken a holiday from drugs (not a good thing either) and usually don't feel that well by the end of the day. Doesn't happen often.
Though meds are always up for discussion with your doc about doses and which ones, but not taking them is not. We're like diabetics and we have to take them. There's no "minor" organ damage and it never stabilizes. Rather it gets worse and worse. And when you have to go back on your meds, you'll have to take twice the dose to quell the flare(s) and to stabilize your system.
I take a ton of medicine, and bet I could beat most of you out on the number of them, except wonderful Taz.
You got to hold on.
I take a horrible number of meds,too. I have contemplated stopping them all at different times over the past few years. Every six months, I take my med list to each of my doctors, (PCP, Rheumy, Pulmonologist, Hematologist, and Psychiatrist), to ask them what I can leave off. Each doctor is adamant that none of the meds can be left off. My meds run about $900 a month after insurance. I feel so guilty because of the things my family goes without so that I can have meds. We have a daughter who is a sophomore in college. We are managing to pay her tuition because we started saving for her the day she was born. She’s having to work to pay for her gas, textbooks, spending money, etc. I feel bad because my parents paid for everything when I went to college. I expected to be able to do the same for my only child. Needless to say, family vacations are a thing of the past. Sometimes I just don’t feel like I am worth all the sacrifices that my husband and daughter make. I desperately would like to stop all the meds, but I’m terrified that if I do, I’ll end up having a stroke or serious heart attack that will leave me an even bigger burden than I already am. This is why I continue to take my meds day after day. I hope that whatever you decide you will be as happy and as healthy as you can be.
With regard to your statement about "treating the lupus only" because the other drugs just treat symptoms. Well, that's what cytoxan is doing. . . that drug is just treating a symptom. Remember there is no cure all of the drugs we take just "treat symptoms" unless there is specific damage in a specific organ. For example I now have pulmonary hypertension and I would be an idiot to stop taking that medication.
I see the doctor in a few hours, you all have made very valid reasons for going back on meds, I've been very very lucky so far... with that being said I will talk to him and see what he thinks would be best. Thank you all for all your input. will post latter.
Saw the doctor, he gave me a injection of kenalog to quiet down the rash, when I asked about the cytoxan or immuran he feels I would be best suited going to a teaching hospital's rheumatology clinic, as my case is very complicated with a rather extensive medical history ; luckily for me there's one at USF Tampa, I've heard good things about their lupus clinic, so heading there in november. He did a complete about face from the last time I saw him he wanted me on treatment either cytoxan or immuran with prednisone and while I agreed to the prednisone I declined the other hoping this would clear up on its own, and instead everything got worse, once again I'm left feeling like the doctor dumped me and just didn't want the hassle, but not before billing the insurance $500 for the visit the first one was $1400 with the biopsy, gee now I remember why I don't trust doctors or have much use for them. Oh and he also said there's a new drug to treat moderate to severe lupus that can help the organ damage only he couldn't remember the name, does anyone know what he was talking about??
If he is talking about Benlysta that helps some people with symptoms but really doesn't do anything about organ damage Sounds like your doctor is a dermatologist?? If so you really do need to be followed by a rheumatologist as well espec in a complex case
Yes he is but he's the one that originally wanted me back in treatment. After some research the new drug he was referring to is Epratuzumab its not available here yet, its in the final phase of trials, but the reports say its promising for treatment for those of us with moderate to severe lupus with organ damage. Benlysta is good if your lupus is mild, I was told when it came out I wasn't a candidate for that drug. We'll see how things go got that shot yesterday feel like a truck hit me today, I guess thats normal.
Are you on plaquenil? Or do you really need a biologic? I think you should see a rheumatologist right away.
Good luck!
The doctors believe my lupus is severe enough that only another round of biologics might put me back in remission, now that the kidneys are going, the last healthy organ I have left I'm willing to try some form of treatment just to avoid dialysis, I'm not very optimistic as most of my experience with this disease like the others that have it has been a nightmare, I just have to remember to keep telling myself It could be worse...
Who are your doctors other than the dermatologist??? If you have autoimmune kidney disease you should be followed by both a renal doc AND a rheumatologist = a dermatologist just does not specialize in managing glomerulonephritis. Unfortunately the remission you are hoping for is elusive = a dose or course of biologics may control this problem in the short term but it doesn't take lupus away There is no cure for lupus thus maintenance medications become extremely important in minimizing the internal damage done by this illness. Unfortunately a drug that hasjust started phase 3 trials is years away from being available but there are other treatments available. Hopefully you will get some answers soon and get on the path to getting better.
If it makes you feel any better about your local doctor, my very conscientious rheumatologist said that if I ever had an unusually bad stretch of illness, she would send me to a teaching hospital, too. Although she is totally on top of everything with me, she said it would be invaluable to have an entire team of doctors working on my case simultaneously. I have doctors for each of my issues, but they’re spread out to kingdom come. It would be great to see the entire lot of sub-specialties all in one day.
I had a primary, a rheumy, nephrologist, neurologist,dermatologist, hematologist/oncologist, pulmonologist, cardiologist,
and pain management, I'm starting all over again with a team at a teaching facility it will either help me or kill me.
poobie said:
Who are your doctors other than the dermatologist??? If you have autoimmune kidney disease you should be followed by both a renal doc AND a rheumatologist = a dermatologist just does not specialize in managing glomerulonephritis. Unfortunately the remission you are hoping for is elusive = a dose or course of biologics may control this problem in the short term but it doesn't take lupus away There is no cure for lupus thus maintenance medications become extremely important in minimizing the internal damage done by this illness. Unfortunately a drug that hasjust started phase 3 trials is years away from being available but there are other treatments available. Hopefully you will get some answers soon and get on the path to getting better.