Author Topic: Any men on here?  (Read 443 times)

Gorn

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Any men on here?
« on: July 07, 2018, 02:53:03 PM »
If you are a dude, why don't you stop in and say hello?

There aren't very many of us, comparatively, and it is kind of easy to get lost when much of the medical community thinks this is a disease that only affects women.
Today I learned that statistically speaking, there are no real differences in the prevalence of disease complications between men and women with Sjogren's.

I also found this information sheet on SS which was the first one I have seen that featured a man: https://info.sjogrens.org/this-is-sjogrens-m

The main difference for us, I think, is that typically men are much more reluctant to talk about their problems. That can be pretty isolating when one is faced with such a daunting condition.

I hope you will leave a comment or just say "Hi" to let others know you are here.
Carry on, brother.



Joe S.

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Re: Any men on here?
« Reply #1 on: July 07, 2018, 04:00:03 PM »
I am a man. I have been on here for some time now. I am sorry that you feel alone. Typically one in ten of those with Sjogren's is male. This appears to be a typical ratio for most of the AI diseases.

The incidence of male encounters with AI diseases may be fewer as most men tend to self medicate with Alcohol. They also prefer not to look weak, so they hide the symptoms.

If you wish to talk, I do take PM's.
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snoweye

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Re: Any men on here?
« Reply #2 on: July 07, 2018, 11:09:22 PM »
Another guy here.

I don't try to appear strong because relative to a few short years ago I am not. It is kind of liberating.

I don't try to hide my health problems amongst people I know. Sometimes I joke about them.

Don't complain much either. As there are infinite more interesting subjects to discuss and I just try to get things done.

Guys, what autoimmune specific blood-work do you have if any? It seems the vast majority of males I talk to with SS symptoms are seronegative so I wonder if there is a difference in the seronegative proportion between the sexes.

Joe S.

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Re: Any men on here?
« Reply #3 on: July 08, 2018, 02:34:53 AM »
The first major symptom for me was a moth on my face. I had lupus tests run. Then I had had some blood tests. The blood showed nothing. I finally when to a specialist from the University of Minnesota. I was diagnosed on symptoms. He had over a decade of blood tests to look at.

I had problems with Methotexate and Plaquinil, quinine water also is a problem. So I am using supplements. My doctors do not believe in the low dose antibiotics to kill the nano-bacteria so I use frequency to help with that.
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Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

markt

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Re: Any men on here?
« Reply #4 on: July 09, 2018, 04:09:10 AM »
Hi,

I am a 32 year old Male from Florida.  It seems more and more guys are joining our ranks unfortunately... Young ones at that.

As for myself... negative for Rho/La, positive for ANA, positive biopsy showing infiltrate/scialenditis, positive Salivary Protien-1 and Carbonic Anyhydrase-6 antibodies, vitamin-d insufficient, low Compliment-4, high IgG1, and borderline high RF.  Enough to for John Hopkins to profile early Sjogrens.  The first test that caught the active immune response was the Bausch and Lomb Sjo test ordered by my Ophthalmologist who referred me to JH.  She was suspicious based on my dry eyes/mouth and positive inflamma dry test for MMP-9.  For me, the symptoms appeared all at once a year a go in a massive immune response/flare.

I am far and away better than I was then... but I still manage a variety of symptoms.  Sort of like the Dr. Jekyll and Mr. Hide kind of thing... 
« Last Edit: July 09, 2018, 04:11:10 AM by markt »

Kristian

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Re: Any men on here?
« Reply #5 on: July 09, 2018, 07:19:30 AM »
I am a 38 year old man from Florida, been dealing with Sjogren's since I was about 32 as well.  Probably had light symptoms for years earlier, but everything went into overdrive at 32 with a high stress job.

Men are definietely more rare,  and unfortunately we seem to get it pretty severely when we do.
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vniskasa

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Re: Any men on here?
« Reply #6 on: July 10, 2018, 07:48:52 AM »
Hi, I am 25 years old and was diagnosed when I was 22. Symptoms began at least a year before that.

Positive ANA, SSA, SSB and RF.

Pete0211

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Re: Any men on here?
« Reply #7 on: July 10, 2018, 09:03:15 AM »
50 here. No positive diagnosis, but I have the dryness symptoms, and last time I saw a rheumatologist she was sure I was in the early stages, but I hadn't followed up with her recently on that (she seemed to have lost interest after several negative blood tests and a negative lip biopsy). Been controlling things with cevimeline, a healthy diet, regular exercise and sleep. It's been two years since I was blindsided by overwhelming dryness (mouth, eyes, nasal passages, throat), but looking back, I've had dry eye problems for at least the past 5 years (had to stop wearing contacts around that time due to the dryness).

I still lurk here, and join the Thursday chats from time to time.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

Gorn

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Re: Any men on here?
« Reply #8 on: July 10, 2018, 04:53:11 PM »

Guys, what autoimmune specific blood-work do you have if any? It seems the vast majority of males I talk to with SS symptoms are seronegative so I wonder if there is a difference in the seronegative proportion between the sexes.

I tested positive for Anti-RO/SS-A antibodies. Then had a positive lip biopsy.  Then about six months later the dryness got much, much worse.

It's nice to see all the replies. I don't know why, but somehow it helps not to feel like I'm the only guy on the planet going through this.