I started my symptoms early, in the late 80's. No one caught it. Eventually I got diagnosed in the 90's. It took 7 years to convince the VA I had lupus despite the lab work, letters from various physicians and pictures of my joints at twice their normal size. Being male didn't help. Being happily married did. It kept me from hitting some doctors who thought they were too smart to bother reading a recent study on lupus, or looking at the current statistics as opposed to the stats they had read in the seventies.
As to being male with lupus, here are a few things I've learned:
Testosterone isn't really used as a therapy for women with lupus, but it's worked wonders for me. I read somewhere it's generally very low in women with lupus, so I had my doc check my levels. Too low. Got a patch and felt like myself again. I don't really care if my beard gets thicker or I gain some extra muscle. The usual problems with T don't hold for me; levels are only being brought up to normal, so it's not a hazard.
I hate being weak. The last hospitalization left me unable to feed myself. You'll probably never get that bad, so no worries. But if you work out, if you exercise, it's not half as bad. Exercise is torture for me. Being too weak and feeble to hold my wife is worse. So I exercise.
Take enough meds and you'll wonder why you ever thought sex was interesting. ALWAYS tell your doc if you see changes in your libido as soon as you notice anything. This is so low on their priority list they generally don't address it till it's a problem. If you say it's a problem often enough, they'll find meds that help and don't make you feel emasculated. I like being a guy, I'm sure you do to, so don't miss out on the best parts.
I've struggled with this disease for over 20 years now. If I've learned one thing, it's to fight like there's no tomorrow, to never give up. Some choose to endure, I've chosen to fight. And I've had a damned good life despite several terminal diagnoses. Don't let this slow you down. Get a good doctor, stay on good meds, and make sure he knows you want a full, rich, and exciting life, and you won't settle for less. Quality of life doesn't require a cure, it just requires making the most of what you've got, making the life you can enjoy in your circumstances.
I've been very sick. I'm very sick now. The meds I take make me miserable, and it's even worse if I don't take them. But everyone around me knows my mantra. They remind me when things are getting out of control. "Take it day by day. If you can't take it day by day, take it hour by hour. If that won't work, take it minute by minute. Always focus on winning. The disease may win the war, but I can win a lot of battles before it does."
More power to all of you.
As to being male with lupus, here are a few things I've learned:
Testosterone isn't really used as a therapy for women with lupus, but it's worked wonders for me. I read somewhere it's generally very low in women with lupus, so I had my doc check my levels. Too low. Got a patch and felt like myself again. I don't really care if my beard gets thicker or I gain some extra muscle. The usual problems with T don't hold for me; levels are only being brought up to normal, so it's not a hazard.
I hate being weak. The last hospitalization left me unable to feed myself. You'll probably never get that bad, so no worries. But if you work out, if you exercise, it's not half as bad. Exercise is torture for me. Being too weak and feeble to hold my wife is worse. So I exercise.
Take enough meds and you'll wonder why you ever thought sex was interesting. ALWAYS tell your doc if you see changes in your libido as soon as you notice anything. This is so low on their priority list they generally don't address it till it's a problem. If you say it's a problem often enough, they'll find meds that help and don't make you feel emasculated. I like being a guy, I'm sure you do to, so don't miss out on the best parts.
I've struggled with this disease for over 20 years now. If I've learned one thing, it's to fight like there's no tomorrow, to never give up. Some choose to endure, I've chosen to fight. And I've had a damned good life despite several terminal diagnoses. Don't let this slow you down. Get a good doctor, stay on good meds, and make sure he knows you want a full, rich, and exciting life, and you won't settle for less. Quality of life doesn't require a cure, it just requires making the most of what you've got, making the life you can enjoy in your circumstances.
I've been very sick. I'm very sick now. The meds I take make me miserable, and it's even worse if I don't take them. But everyone around me knows my mantra. They remind me when things are getting out of control. "Take it day by day. If you can't take it day by day, take it hour by hour. If that won't work, take it minute by minute. Always focus on winning. The disease may win the war, but I can win a lot of battles before it does."
More power to all of you.
