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Early onset of Lupus

Autoimmune Diseases | Last Active: Mar 17, 2021 | Replies (8)

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@erikas

@rebeccabrunner Welcome to Mayo Clinic Connect, a place to give and get support.

I'm sorry to hear of your diagnosis. 25 is the prime of your life. It's wonderful that you feel healthy. May I ask how it was discovered that you have Lupus?

Members like @thumperguy @molly48823 @leezer @rambo77 @Erinmfs @lidnaj @joybringer1 @ema12 @lidnaj @markymark911 @jlclaussen and mentor like @becsbuddy have recently posted to the Autoimmune group and may be able to offer support or suggestions.

I'm wondering if you have the means get a second or even a third opinion? You are making a big decision by taking a drug, while you are so young, that has terrible side effects. I think I'd want to make sure that this was something completely necessary at this time.

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Replies to "@rebeccabrunner Welcome to Mayo Clinic Connect, a place to give and get support. I'm sorry to..."

Hi Erika! Thank you so much for the lovely welcome and kind message. So I first got an opinion from a rheumatologist (I was randomly there for my hyper mobility syndrome and they did random bloodwork for protocol and found my ANA very high) that told me I had an autoimmune issue but was unsure of what it could be and after a lot of bloodwork he said it pointed towards Lupus and that I needed to start Plaquenil immediately to slow the disease in my body. I was shocked and decided a second opinion would be best. And unfortunately I just met with my second opinion rheumatologist this past week after another round of bloodwork and she has said about the same thing. She called my situation “Undifferentiated connective tissue disease” but said that mine would surface as Lupus from the looks of my bloodwork. I guess a big indicator was with having my C3 and C4 complement levels low and my ANA at 1:2,560 with a homogeneous pattern along with a few other tests it indicates the early onset of Lupus. However I have little to no symptoms or pain so she said she can’t exactly diagnose me with Lupus until the symptoms follow my
Bloodwork. She said we can either monitor my bloodwork every 4 months and wait until the disease gets worse to take the medication or start taking the meds now and hope that slows the progression of the disease in my body. I’ve read a lot about functional doctors and healing with food but unsure if that’s smart to do without taking the medication. Sorry for the long message but that’s kind of where I’m at :/ seeing if anyone has advice or experience possibly. Sending love ♥️

Yes, I have a different autoimmune disease, but I've found that the medications can be worse than having the disease! Take one day at a time. Talk to your Mayo doctor. Listen to your body.