Welcome to the forum Be!!
Sorry you are having so many "overlapping" issues. Overlap disease/conditions or all too common with Lupus and most here have an overlap of two or more issues.
Discoid rash . . . SO sorry for you. The discoid rash is much more difficult to deal with than the malar rash, as it tends to scar and is more disfiguring. I really feel for the discoid crew. I have chatted with some who have had steroids injected into the discoid patches to help with really resistant spots. If you get them on your scalp, they can cause permanent hair loss, so they are not to be ignored. A dermatologist may be more sympathetic to the discoid issues as the rheumy, who thinks more about
the functions of the body.
Steroids - are thought to be a fire extinguisher. They are life saving for sure, but they do need to be used with care, as you say, they DO have nasty side affects that need to be considered. They also spare many here from extreme organ damage. So for many, they are an absolute necessity. Each of us needs to work through this with our docs individually to decide what is best. I have muddled through w/o the use of prednisone and after many years of dealing with flares lasting from days to years, have decided (with my rheumy) that I should go on a medrol dose pack at the beginning of my next flare to see if we can nip it short. So, while I don't have organ involvement, I am ever so grateful to have this option for future flares. I think a zap of prednisone would have spared me from a two year stint in the recliner.
Flares - You sound like a very busy person (like most of us) and those of us who are driven to participate fully in life, can really set ourselves up for long or frequent flares. Most members here have learned at some point, that - for us - life needs to paced (a delicate balance of rest and activity). This pacing takes lots of practice to figure our just how much we can push ourselves w/o causing disease activity . . . but it is well worth learning, as it is our number one weapon against flares.
There are some helpful links at the bottom of my signature with lots of good info. I think you will enjoy the "Lupus Resources" topic, which contains helpful suggestions from all the members here.
Welcome to the forum!!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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