Early onset of Lupus

Posted by rebeccabrunner @rebeccabrunner, Mar 16 10:11pm

Hello all! I recently was diagnosed with early onset of Lupus. I’m 25 and feel pretty healthy. I eat quite healthy and am completely gluten free. My ANA was insanely high as well as other bloodwork indicating Lupus. My rheumatologist wants me to start taking Plaquenil 2x a day to slow the progression of Lupus within my body and I am so scared. I would be taking this medication for the rest of my life and the long term side effects can be so terrible. Does anyone have any advice? Thank you dearly.

Lupus I don't know what to say pericarditis… That's a warning sign… Kidney damage hives on your skin… A new one… Loss of nerves numbness in your upper thighs.. NSAID humira for Crohns not good enough… Fatigue obviously… I'll keep posting

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@martingraham37

Lupus I don't know what to say pericarditis… That's a warning sign… Kidney damage hives on your skin… A new one… Loss of nerves numbness in your upper thighs.. NSAID humira for Crohns not good enough… Fatigue obviously… I'll keep posting

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Thanks for your response! I’m a tad confused though, are you saying these are symptoms to look out for?

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@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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Good morning @rebeccabrunner Here is a link to a discussion that you may find helpful. I have a different autoimmune disease, but we’re all here to help each other. Just take one day at a time and remember that education is your best friend.
https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/?pg=1#comment-401568
Becky

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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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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 ♥️

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@becsbuddy

Good morning @rebeccabrunner Here is a link to a discussion that you may find helpful. I have a different autoimmune disease, but we’re all here to help each other. Just take one day at a time and remember that education is your best friend.
https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/?pg=1#comment-401568
Becky

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Thank you so much Becky!! Appreciate this so much. I will read now 🙏🏼

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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.

Jump to this post

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.

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@Erinmfs

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.

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Thank you for your response 🙏🏼

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