Discoid Lupus

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I have had discoid lupus now for nearly 6 years and it pretty much always been flared. I'm 23 years old. I have the butterfly rash on my face and it gets me down. I've tried so many drugs - plaquinel, azathioprine, metharexate, mycrophenolate and of course prendnisolone. I'm currently on prendnisolone, mycrophenolate and plaquinel, but still it is very sore and visible. It really gets me down and I hate taking all these drugs. No one understands as it is so rare and I don't feel like I can explain how I feel. I feel tired a lot and I get stressed easily which causes it to get worse. It's a viscous cycle. I'm thinking about packing all the drugs in and trying a natural route. Any ideas? I just don't know what to do next. Any suggestions or if you have discoid lupus too id love to hear your story. Thank you  

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  • Posted

    Sorry to hear your not doing well, the trouble with this condition is everyone is different, so treatment is difficult, the one thing I believe does help all of us is positive thinking which I know is hard,try to stay strong and get on with your life as best as you can and I really hope your symptoms settle down, this isn't very helpful but your not alone,we all suffer one way or another, good luck.
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  • Posted

    Hi Georgia im lorraine and have  R/A S/S R/P amongst others . But i am been checked for Lupus as i have had different symptons with the R/A . It was nly picked up as i went to go for a trial new Biological drug called Tocilizamab and i must sau i was sceptic at the time but like you i have down that road after the methotrexate/plaquinil and a lot of different levels with them . Im 51 and have had all my R/A since aged 11 ,but the Raynaud's was what tiped off the doctor so as i said been for a number of tests for the lupus it does look likley that i have it . But i must say you need to see your specialist and ask about the new bialogical drugs . I have been on them for 6 months and have been good ,but in dec there i was due to get my treatment i had an absess and they coudnt give me it because of that . and O.M.G what abloody bad time iv had . I could go on all day but my hands and shoulders are telig me to stop so good luck and i do hope i helped Georgia.rolleyes
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  • Posted

    Hi Georgia, I am so sorry you're having such a hard time with this.I completely understand your frustration. It's hard to stay positive when things aren't working out. How did they actually diagnose it as discoid lupus?  The 1st year I had so much bloodwork done and biopsies done to get the diagnosis. I also have discoid lupus since May 2013. Like you I was on prednisone as well as plaquinel (200 mg 2 x / day) as well as various topical steroid creams. Between weight gain and hair loss, I was mostly depressed that 1st year. I had no self esteem either. The 1st year was the hardest but luckily enough, things have finally settled down. Maybe you should try a mild anti-depressent to help you get through this. Also, it's important to try and take your mind of the illness and focus on something else like a trip, taking a course, learn a language etc. Anything to take your mind off it. I had made the decision that this was not going to control my life and just got on with doing all the things I wanted to do.  It is true what they say about trying to stay positive through this. It's also important to get lots of rest. After 6 years, what is your doctor saying about your treatment?? It doesn't appear to be working. Take care.
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    • Posted

      Hi Cheryl, thanks for the reply. I've been really patient with it for all year years and it's just getting to me now as I feel I'm being ignored because no one can make it go Into remission. I'm a positive person a lot of the time but sometimes it all gets too much. Indeed to speak to my dermo again and see what's next. I just hate taking all these strong tabs when there not having any effect. I don't feel I need anti depressant as I don't feel like I need it right now. I was diagnosed with a biopsy. Thanks for your message x
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