Lupus Support Group

Bunny,

Whether you take meds to control your lupus is totally a personal choice. There are many times that I have asked myself if taking all of them is truly worth it. That said, I have to say I believe for me personally it is.

I'm not sure what type of lupus you have been diagnosed with, but for those of us with SLE we have to remember the level of organ involvement that comes with it. If I can spare my organs by taking the meds I take than I will do it. I have experienced mild kidney involvement, have issues with my heart, lungs and liver due to lupus.

I am currently on immuran to hopefully reduce the damage and allow me to live a somewhat normal life. I have to say the first 6 to 8 months of immuran I saw little to know improvement and wondered if I should continue, but for the last month I have felt better than I have in years! Truly!

I too can only speak for myself and I can tell you that I am so much better on my meds. For me, there is a huge difference in my symptoms. I am severly sick when Im not on the right ones to where I am almost non-functional. I feel horrible. This last year was the worst for me. I just wanted to die until I was put on better meds that worked. Yes, I still feel bad sometimes, but not nearly as horrible as I feel when Im not on my meds. I have no quality of life without them right now. I guess it depends on how sick you are/feel from this disease. In my case, I can die from a blood clot, stroke or heart attack from the APS. So, like Melissa said, some of us have to take certain meds to keep us alive. I dont have a choice. Im just happy that there are drugs that help me and many others who suffer from lupus.

Please don't take me wrong, I was just making an observation, I do believe that meds are very important, I have SLE Lupus by the way and have had a heart attack, I just hate meds, I know I am going to have to take them soon also, and as it is now I am sick almost everyday so its coming, Have a wonderful pain free day

hi there well i felt the same way as you cause i thought if i got on meds i was going to be my old self again, jumping working playing sports, dancing just all kinds of stuff i got a rude awaken. but i got another rude awakening when i ran out of my meds cause i just couldnt get them until i was able to (money) oh then i noticed a difference all my symptoms was maganify to the point that i wasnt even functioing. when i started back on them i guess i did notice that it did help i have ra with overlapp of lupus sjogrens syndrome osteoarthrits fibro etc. so i guess i would be even worse if i took nothing

Hello Bunny. Good to hear you're doing fairly ok without meds. My experience is similar as i was so convinced that i can survive without medication - am a bit new agey. earlier in the year i finally caved in and am now on mobic, lyrica and most recently plaquenil. My quality of life has definitely increased especially on the Lyrica for Fibromyalgia. If am late to take a dose, i start experiencing shooting pains in my upper arms (Very timely reminder, i'd say).

That said, your health is a very personal decision...don't let any of us (fellow lupies, doctors family) steer you down any road unless you feel comfortable with it.

Good luck and may you have many pain-free days!

Hi bunny103. I always hated the thought of taking meds, but this year when I had the worst flare up of my life that lasted a few weeks, I had to do something. I'm like mumbi said, if I don't take the meds on time, I start feeling it. Pain wise and just not feeling well.

Just as a side note which helped me (and may not be right for you). When I started the meds, especially Lyrica, I knew there would be side effects, so I made myself get through them and it was not easy. I also started Plaquenil and started with 1/2 doses. It took me 3-4 weeks before Lyrica side effects subsided and another 3-4 weeks before I could honestly say that I felt better. So for me, the meds are working, but it took some work, nausea, dizzyness and just overall uncomforableness to adjust to the meds.

Good luck whatever you decide!

in the beginning I thought just like you..didnt take meds for a year.. one night went to sleep woke up with a horrible headache went ot the er.. my blood pressure was very high ..they sent me home 12 hours later i was unconscious fighting for my life my high blood pressure had caused strokes and severe kidney problems.. So after that point i wasnt feeling much of lupus at all... i was hurting all the time but that was it.. i will be honest with y ou after that episode I never miss a dose of medications because without medications now i wouldnt be here..

yes its a personal choice I didnt take the chance out of fear of the meds making me feel worse.. of course they keep me alive but the steroids alone make me hungry and bloat up but in the end when i wake up every morning and i see my kids it makes it worth it..

i meant before that episode i just hurt everyday