Men with SLE and hormones

Well, here's an intriguing bit of research for us men. Apparently men with SLE may develop "critically low" levels of testosterone, and treatment with prednisilone makes things worse. The authors suggest that testosterone supplementation might be worth investigating.

Does this mean I am turning into a woman? (Although I can't say I have noticed that I've got any nicer lately. Or felt a sudden urge to iron the skirting boards*. Weird.)

More seriously, it seems clear that we don't know anything like enough about the endocrinology of our auto-immune conditions.

*just to avoid confusion - and hate mail - this is a satirical remark :)

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  • this is an interesting tidbit- and (harsh but true) if it's affecting menfolk and testosterone, I imagine the medical profession may fall all over themselves to find links between SLE and endocrinology. Heavens knows when women tried to bring up hormonal changes, we tend to get told we're just depressed! So at least this looks like it will bring up some investigations. It's interesting, because a lot of the treatments we have now are very new, and as a result modern medicine really doesn't know what a lot of what we take for our various conditions even do, or how. The more investigations done, the better. There's more and more evidence the medication I'm on induces a form of hypoglycaemia that isn't quite full blown diabetes, but definitely can make a patient go hypo (something I've noticed and I've had to keep an eye on things as a result). However, it's a new medication just under a decade of being in use and there hasn't been a joined-up attempt at collecting data on various changes until recently.

    All good stuff, and good to see things are being flagged.

  • yes, it is good to have these things highighted. It seems to me, from the inside, that many of my symptoms feel like they are the result of some kind of misfiring of a whole bunch of homeostatic processes, not just the immune system. For instance, when I have my episodes of shaking etc, it feels exactly like when I'm turning the key in the ignition of my car but it isn't "catching" - as if my body is trying to trigger some kind of cascade process but some switching thing is set too high or too low for it to "catch". So it ramps up the trigger activity to an excessive amount. Then it floods, and i have to call the AA and get myself towed away and...OK maybe the analogy is getting a bit strained. But yeah, hormones, cell signalling systems, all that. x

  • 😆 GRRRREAT simile 🚘

  • Yes, I can see this! I am a guy, I have SLE, this is on the personal and private side. Over the last few years the sexual desire had decreased to now it is almost non existent. The little fellow very seldom will rise to the occasion, and if it does it is only half way, but will actually start down during the process. By the end it is like a wet noodle.

    It is extremely aggravating for my wife. She gets in the mood and She is left with a wet noodle. I make sure I use other means for her to have the "O" (oral and or toy), but, she says it is not the same and not as satisfying.

    I also have malignant hypertension soooo, viagra etc. is not an option.

    So yes I can believe lupus effects that also?

  • Sorry to hear that, Tiras. Wish I had some helpful advice or ideas.I imagine that there might be some specialist advice somewhere. One obvious possibility might be urology or even oncology, who must be used to helping men with similar problems post-prostate surgery or chemo etc. But I don't know that would be a solution, more a way of coping. Best wishes anyhow x

  • Oh Mike, but I thought you know that men with lupus and lung problems turn into woman hahahaha

    just to be on the safe side, stay away from soy milk, I read somewhere about a guy who grew breasts... just saying.

  • Good point. I can't afford the extra expense of bras at this point.

  • I am finding so many things to relate to on here. I'm a 48yr old woman and I completely lost all desire for intimacy some time in 2014. I thought this was a psychological problem. I lost my boyfriend because of this and don't dare to attempt another relationship. Nobody wants a cripply, sickly woman who can't even fathom intimacy.

    I'm sorry for you Tiras, with your wife not just being extremely sympathetic about your health issues. I had a long term relationship with an impotent guy in my 20s, and it just made me love him all the more.

    I guess people who are used to being sickly become more sensitive and sympathetic over the years.

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