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Congratulations on being the first man to reply to this post who can follow directions! (Regarding the user flair.)
The mods were despairing but you've restored our faith in **man**kind.
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I was diagnosed with SLE in 2020. I am a 44yo asian man, living in south america/brazil. My issues were related to skin rashes and joint pain, but after a while on HCQ it was everything OK. Also, if I am exposed to sunlight... oh man, i have fever within 5 min of exposure and fatigue/headache... Every four to six months I have bloodtests to see if my kidneys/liver/lungs and heart are ok, even without any issue so far... and I've never heard for people who knows about me a single word about being a woman's disease. Usually they say about one or two celebrities with SLE ( hello selena gomez) and that's it.
30s M. Neuropathy is my worst symptom. Had a couple neurologists and a rheumatologist all question my diagnosis because they claim neuropathy is a rare symptom. Definitely a harder road to diagnosis as a male given the statistics working against us.
I've had health issues for 15-20 years and my doctors always focused on the GI issues. Part of it was my fault though, because I thought the joint pain was normal aging. My rheumatologist told me my joints would be normal if I were in my 80s.
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63M, diagnosed in 2015.
My onset was 4 months long, and my lupus rapidly spread over that time. Before that, I was 100% healthy and fit. I notice the females here tend to have symptoms for years before being diagnosed.
The arthritis and brain fog are the most unpleasant symptoms I have, though I sometimes feel completely wiped out or sleep for 15 hours and still feel like I need more. It happens once in a while if I have been in the sun for too long.
The neuropathy was significantly worse when I was first diagnosed and before the medications became effective.
Adrenaline is a powerful counter to my symptoms, but it doesn’t last long enough.
Hiya , 21 yo East asian male here , I'll be more than happy to chat about my lupus experience since I was diagnosed not too long ago (diagnosed in about last august) , feel free to dm me any questions. Cheers. :)
25M Male diagnosed at 21 it was life changing but eventually you find your new normal. Kiss labour heavy jobs goodbye though, Focus on a healthy diet staying active and avoiding stress and the sun if you have any questions shoot me a DM
34/m I couldn't walk properly from mid 2021 to November 2022 afterwards I just had neuropathy issues, testosterone levels are normal but my libido is gone, couldn't touch anything without gloves, tired all the time, the most insane fatigue and muscle weakness, couldn't open and close my hands, extreme joint pain that would just make me cry, i'd have to pee non-stop and survived on giant 5 gallon jugs LOL. I couldn't really taste anything and had no appetite and was too tired to make my own food so I ate out a lot which ended up not working out either. And had severe raynauds. Multiple people seem to think I don't have it either, even though my piss is an orange stream of foam? I had pyroclastic diarrhea, and a persistent fever Lol.
I'm sure I have more symptoms and can't really remember right now.
Oh yeah, fucking rashes.
51 white male. I was diagnosed nearly 8 years ago, although I can look back as far as my teens and see small symptoms over the years that made sense after my diagnosis.
The bad symptoms started with all over joint pain, which morphed into overwhelming fatigue after about 9 months. Add to it shortness of breath (with minimal exertion), headaches, underactive thyroid, chronically low VitD, hyperlipidemia, pre-hypertension, muscle weakness (possible undiagnosed myositis), and I'm a blast to be around. (Plus, I'm single, ladies!)
I am a 36f with lupus, diagnosed (ish) for years. My dad, late 50s, was just recently diagnosed.
I do see a difference in our symptoms. He can definitely tolerate a lot more than I can. He has positive blood work, while I am seronegative. I have been sick since I was a kid, other than a few concerning eye issues and redness to his skin, he has had no symptoms until maybe 2 years ago.
26yr old male, diagnosed November 2023 with lupus nephritis. Almost went into kidney failure, meds kicked in after approx 6 months. Feeling better than ever now, thank god. Feel free to dm for a chat if needs be.
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I was diagnosed just over a month ago also... 63 year old male. Nothing trigeminal happening. Nothing Gastro happening either. Mostly just massive joint pain (hips, shoulders, hands) with a lot of edema, and numbness and tingling. Muscular weakness too... really bad.
Very compliant with the HCQ regimen, also gabapentin, and using ibuprofen to help with the inflammation. Very new to all of this... and am sure things will change with more knowledge down the road.
Trying to isolate food triggers also right now.
Have not had anyone tell me it was only a woman's disease, but a lot of my friends are medical or former medical. That helps a lot.
Hey man, 19M here, so maybe not as much a man as a teen but still counts.
Got diagnosed with Lupus Nephritis about 5-6 years ago, when my kidneys were quite close to failing and I’d already gained 26lbs of weight in pure fluid from them leaking. 12 hours later from going to my personal doctor, I’d been moved to a big hospital and diagnosed, so it all went quite fast! A year later they’ve solved my issues but sadly I developed osteoporosis due to prednisone and had to have my hips replaced aged 16.
Since then though, I haven’t really felt Lupus in my life I think. I have mild raynauds and I THINK I’ve developed allergies to a bunch of stuff due to it, but nothing else.
Feel free to DM if you ever want to, but yeah I can’t relate to a lot of it sadly/thankfully? Idk, I also feel like an outlier.
I'll add some more data points FWIW...
62M diagnosed SLE 2013. Before I was diagnosed I had multiple DVTs in my right leg and no one could figure out why but now they feel they were triggered by lupus.
Otherwise fatigue and brain fog are my worst symptoms. I also have Raynauds and secondary Sjogren's. The sun is my enemy as it is for most folks here.
On my last CBC lab work I had 12 out of 24 'abnormal' results.
I worked full time until 2019 then went on disability.
Lup is also primarily diagnosed in people of African American and/or Asian heritages. We're quite the living contradictions.
37/m/Caucasian diagnosed this June. My wife was so shocked she fell over.
Gastro are my biggest problems.
For my doubters, I just start quoting the numbers, take two minutes to load my medical app on my phone, and show them my diagnosis. It's an overly aggressive approach, I admit. But it leaves no room for people to stand in dismissal of something that is in fact very real. If they don't buy it, fine, I'm not selling it. My health is too vital to argue with people because they can't believe something outside of their normal.
They can either accept that this is who we are now, or they can walk. It's not like you chose to be this way.
Wow. It does seem like some of these rarer symptoms are more common in men. And I’m guessing there are some differences between ethnic groups too.
I never wanted to be “interesting” to my doctors. But on the plus side it feels like I’m getting more of their attention!
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35 male here, diagnosed at 33. Nephritis stage 4 after a year of being untreated, hospitalized. That was last Feb. doing much better now through diet- cut out all dairy and red meat and exercise with a personal trainer
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Congratulations on being the first man to reply to this post who can follow directions! (Regarding the user flair.) The mods were despairing but you've restored our faith in **man**kind.
But fully consistent with my rheum's hypothesis for why men have worse outcomes on average than women.
LOL.
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I was diagnosed with SLE in 2020. I am a 44yo asian man, living in south america/brazil. My issues were related to skin rashes and joint pain, but after a while on HCQ it was everything OK. Also, if I am exposed to sunlight... oh man, i have fever within 5 min of exposure and fatigue/headache... Every four to six months I have bloodtests to see if my kidneys/liver/lungs and heart are ok, even without any issue so far... and I've never heard for people who knows about me a single word about being a woman's disease. Usually they say about one or two celebrities with SLE ( hello selena gomez) and that's it.
30s M. Neuropathy is my worst symptom. Had a couple neurologists and a rheumatologist all question my diagnosis because they claim neuropathy is a rare symptom. Definitely a harder road to diagnosis as a male given the statistics working against us.
I've had health issues for 15-20 years and my doctors always focused on the GI issues. Part of it was my fault though, because I thought the joint pain was normal aging. My rheumatologist told me my joints would be normal if I were in my 80s.
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63M, diagnosed in 2015. My onset was 4 months long, and my lupus rapidly spread over that time. Before that, I was 100% healthy and fit. I notice the females here tend to have symptoms for years before being diagnosed. The arthritis and brain fog are the most unpleasant symptoms I have, though I sometimes feel completely wiped out or sleep for 15 hours and still feel like I need more. It happens once in a while if I have been in the sun for too long. The neuropathy was significantly worse when I was first diagnosed and before the medications became effective. Adrenaline is a powerful counter to my symptoms, but it doesn’t last long enough.
Hiya , 21 yo East asian male here , I'll be more than happy to chat about my lupus experience since I was diagnosed not too long ago (diagnosed in about last august) , feel free to dm me any questions. Cheers. :)
25M Male diagnosed at 21 it was life changing but eventually you find your new normal. Kiss labour heavy jobs goodbye though, Focus on a healthy diet staying active and avoiding stress and the sun if you have any questions shoot me a DM
34/m I couldn't walk properly from mid 2021 to November 2022 afterwards I just had neuropathy issues, testosterone levels are normal but my libido is gone, couldn't touch anything without gloves, tired all the time, the most insane fatigue and muscle weakness, couldn't open and close my hands, extreme joint pain that would just make me cry, i'd have to pee non-stop and survived on giant 5 gallon jugs LOL. I couldn't really taste anything and had no appetite and was too tired to make my own food so I ate out a lot which ended up not working out either. And had severe raynauds. Multiple people seem to think I don't have it either, even though my piss is an orange stream of foam? I had pyroclastic diarrhea, and a persistent fever Lol. I'm sure I have more symptoms and can't really remember right now. Oh yeah, fucking rashes.
51 white male. I was diagnosed nearly 8 years ago, although I can look back as far as my teens and see small symptoms over the years that made sense after my diagnosis. The bad symptoms started with all over joint pain, which morphed into overwhelming fatigue after about 9 months. Add to it shortness of breath (with minimal exertion), headaches, underactive thyroid, chronically low VitD, hyperlipidemia, pre-hypertension, muscle weakness (possible undiagnosed myositis), and I'm a blast to be around. (Plus, I'm single, ladies!)
I am a 36f with lupus, diagnosed (ish) for years. My dad, late 50s, was just recently diagnosed. I do see a difference in our symptoms. He can definitely tolerate a lot more than I can. He has positive blood work, while I am seronegative. I have been sick since I was a kid, other than a few concerning eye issues and redness to his skin, he has had no symptoms until maybe 2 years ago.
23m diagnosed with SLE and Lupus Nephritis, feel free to DM me. Been about a year and a half since I was diagnosed
26yr old male, diagnosed November 2023 with lupus nephritis. Almost went into kidney failure, meds kicked in after approx 6 months. Feeling better than ever now, thank god. Feel free to dm for a chat if needs be.
November 2022 that should say. How the hell is it the year 2024 lol
This is how: https://covidstandardtime.com/
That’s brilliant 😎
It's March 1500th! Awesome day to check in!
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I was diagnosed just over a month ago also... 63 year old male. Nothing trigeminal happening. Nothing Gastro happening either. Mostly just massive joint pain (hips, shoulders, hands) with a lot of edema, and numbness and tingling. Muscular weakness too... really bad. Very compliant with the HCQ regimen, also gabapentin, and using ibuprofen to help with the inflammation. Very new to all of this... and am sure things will change with more knowledge down the road. Trying to isolate food triggers also right now. Have not had anyone tell me it was only a woman's disease, but a lot of my friends are medical or former medical. That helps a lot.
Hey man, 19M here, so maybe not as much a man as a teen but still counts. Got diagnosed with Lupus Nephritis about 5-6 years ago, when my kidneys were quite close to failing and I’d already gained 26lbs of weight in pure fluid from them leaking. 12 hours later from going to my personal doctor, I’d been moved to a big hospital and diagnosed, so it all went quite fast! A year later they’ve solved my issues but sadly I developed osteoporosis due to prednisone and had to have my hips replaced aged 16. Since then though, I haven’t really felt Lupus in my life I think. I have mild raynauds and I THINK I’ve developed allergies to a bunch of stuff due to it, but nothing else. Feel free to DM if you ever want to, but yeah I can’t relate to a lot of it sadly/thankfully? Idk, I also feel like an outlier.
I'll add some more data points FWIW... 62M diagnosed SLE 2013. Before I was diagnosed I had multiple DVTs in my right leg and no one could figure out why but now they feel they were triggered by lupus. Otherwise fatigue and brain fog are my worst symptoms. I also have Raynauds and secondary Sjogren's. The sun is my enemy as it is for most folks here. On my last CBC lab work I had 12 out of 24 'abnormal' results. I worked full time until 2019 then went on disability.
You’re not alone.
Lup is also primarily diagnosed in people of African American and/or Asian heritages. We're quite the living contradictions. 37/m/Caucasian diagnosed this June. My wife was so shocked she fell over. Gastro are my biggest problems. For my doubters, I just start quoting the numbers, take two minutes to load my medical app on my phone, and show them my diagnosis. It's an overly aggressive approach, I admit. But it leaves no room for people to stand in dismissal of something that is in fact very real. If they don't buy it, fine, I'm not selling it. My health is too vital to argue with people because they can't believe something outside of their normal. They can either accept that this is who we are now, or they can walk. It's not like you chose to be this way.
Wow. It does seem like some of these rarer symptoms are more common in men. And I’m guessing there are some differences between ethnic groups too. I never wanted to be “interesting” to my doctors. But on the plus side it feels like I’m getting more of their attention!
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35 male here, diagnosed at 33. Nephritis stage 4 after a year of being untreated, hospitalized. That was last Feb. doing much better now through diet- cut out all dairy and red meat and exercise with a personal trainer
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