I'm new to this kinda thing. I'm 24 year old guy diagnosed with SLE on my birthday three years ago. Life is getting difficult this year. Was wondering if there were any other young guys with SLE on here. Just getting hard with no one really understanding how it is.
Now that you have found us, you have found people who understand.
We also have quite a few guys here.
Tell us a little more about you. What makes life so difficult this year? Are you on any meds? Do you have a good rheumatologist?
Oh yeah, welcome to WHL.
Thanks Debbie. January this year I went back to school to finish one of my fire certs. In February I sarted to have a bad flare up followed by migraines that last for two to three days, fevers every few days, and almost all my joints (back, knees, shoulders, hands, etc..) would swell up at one for several days at a time. I pushed everyday to finish school. I was determined. And still worked a full time job of forty to fifty hours a week as a mechanic. The meds have little to no effect anymore. Had a kidney biopsy done two days ago for first time. The doctor that did the procedure said that the tissue was very brittle and did not look good.
I am taking 1500mg of celcept twice a day, 200mg of chloroquine a day, 5mg of lisinopryl a day, 10mg of prednisone a day, & 40 mg of omprisole a day.
...but I'm a girl...sorry!! Hehe
(Well, I'm 39, so I guess that makes me a laaaaaaaaaaaady)
(Having a hyper day.....I'm normally quite normal!)
First welcome to our WHL Family. I know it is hard to deal with, especially at such a young age. I am happy you were able to finish but you really need to find a way to slow it down. Pushing through often gets us in trouble and triggers flares that don't stop. Your body is trying to tell you what is happening on the inside by what you feel. You are going to have little chance of helping your doctors get this under control unless you can make time to rest your body. Stress and tiredness tend to "turn on" flares. Especially with kidney issues you are having I hope you can find a way to rest.
There are several men here and I am sure they will be along soon to say hello. We really are glad to have you!
Hello and welcome!
Man - sounds like life is kinda rough right now. I am a middle-aged woman so have no "young dude" advice for you, but I would say that you may have to slow things down a bit, unfortunately. It's hard to go from being young and energetic to being a Lupus patient - but that seems to be the cards some of us were dealt. You simply may not be able to keep up with the activity level of your peer group the same way they do....but you can get good treatment and learn to adapt to a "new normal".
if you can get things under control, get to a rested state and STAY THERE - which may mean changing some things about your life (i.e., being RELIGIOUS about ALWAYS getting at least 8 hours sleep a night) - then hopefully you can find a "truce" with your body and the Lupus. But if you push yourself and continue to act like the Lupus isn't taking a toll on you, you may end up way sicker than you want to be (or have to be).
I know that's really hard to do at 24. Heck - it's hard to do at 44!!! But it IS the reality of this stuff. Take care of yourself...you only have one body, and it has to last you your whole life.
I am a guy but its been a while since I was young!
I'm 52 and was diagnosed 3 yrs ago.
My med list is identical to yours except I've never been on omprisole.
Luckily I am still able to work full time-One thing I have found that really helps is being very careful about sun exposure, I'm your typical stereotypical Irish kid with freckles and have never had a tan in my life and generally always used sunscreen and covered up but now I have found that wasn't enough. Nothing will trigger a flare in me faster than brief sun exposure. Joint pain, swelling and fevers for days after 15 or 20 minutes out in the sun.
I see you are a firefighter-my hats off to you! You guys run into buildings when everyone else is running out-the world is a better place thanks to people like you!
Hey I'm 20, not a guy though sorry :/ I do however know two guys with lupus your age through facebook. If you want to get in touch with them send me a private message and I will talk to them too. I'm sure they'd love someone else to talk with too. They're both pretty cool. One lives overseas and does a bunch of lupus related stuff where he lives.