Three rhuematologists suggest I go off meds...predisone...pain pills...methotrexate...really? What will be the quality of life? I have been on meds for 10 years...OMG...Can anyone share their experience,strength and hope?
Why are they suggesting this? Are you in remission? I can understand the prednisone...
i live in south carolina...they say that the new protocol for lupus is to be off predisone(17mg)...and off pain meds(6 a day)...the last time this happened to me i was bed ridden for years...
New suggested treatments are biologic list of tofacitanib...tocilizumab...rituximab or cellcept....I have to pick one...i just failed orencia...
I was off of meds for about 10 years as symptoms were fairly mild- and just took over the counter meds for pain and plaquenil. I did just fine until I came out of remission. It has always been the protocol to have you on the lowest possible dose of prednisone or off all together The long term effects of methtrexate and prednisone are nasty
Do you have a good quality of life now…im freaking out…i have a great life now…i wish more people would write back about their quality of life…
In living with this disease you have to learn how to maintain quality of life in spite of problems. A lot is by learning your limits and adapting a healthy lifestyle. My quality of life is not what it was when I was young but I still enjoy life and am still active.
Right now I stay on plaquenil every other day but only take prednisone when I’m having a full blown flare. I never use it unless I absolutely have to because I hate it. I’ve only been on meds for about a year because I was just diagnosed at 25 but I barely use pain meds (Aleve etc). When I am sore I usually just deal with it 
only because I don’t like to feel like I have to take meds. I do exercise regularly and try to eat very well and for the most part it helps. I have no idea whats in store for me but well see! I also quit smoking which is the best thing you can do for yourself. Good luck!
Thanks for your support…i was diagnosed young too…now its 14 yrs later…i have tried many drugs and failed…i was told i am a bad luppie…stay strong…your doing it all right…stay positive…
It was really hard when I was first diagnosed in 1994. Mainly due to the low platelets. I went into remission after I had my children and did not take meds at all and had a wonderful life. Since I have moved back to Florida, my lupus has been flaring a lot. I.was on medicine until my insurance changed. Now, I have been off my meds for 11 months. It has been really tough. I stay sick all the time. I have been admitted a lot lately to the hospital but I do not let it discourage me. At least I am getting help and will have better days to follow. We have to fjnd strengh some how. Don’t be scared at what might happen. Trust in yourself and God, that things will be good for you. If you flare again, get back.on meds. I do think they should taper you off the meds or wien rather. I really hope it works out for you.