Author Topic: Interested in talking to males with sjogren's syndrome.  (Read 17708 times)

hehewuti

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Interested in talking to males with sjogren's syndrome.
« on: January 10, 2010, 03:35:21 AM »
Hello!

I am interested in starting a discussion with males who have been diagnosed with sjogren's syndrome. 
Since males make up such a small %, I think it would be interesting and informative if we could hear from the males.

Maybe learning about the symptoms, history and progression of the disease from the few, we could learn something new about this disease. 

-Hehewuti

?Be the change you want to see in the world.?
-Mahatma Gandhi




Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #1 on: January 10, 2010, 03:59:07 AM »
Hi Hehewuti,

I'm not a guy, but let me welcome you to the SJS World anyway!  Please do look around as there are a ton of topics that you might find interesting.  Come often as there are gaggles of great members to meet!

Can you tell us a bit more about you so the members can get to know you a little better?

Again, welcome!

Take care -

Patze
« Last Edit: January 10, 2010, 04:19:19 AM by Patze »
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Bucky

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #2 on: January 10, 2010, 11:23:05 AM »
Hi Hehewuti -

I'm not a male either, however, if you put:  Men with Sjogren's in the search box to the top left, it will take you to a previous thread about this subject too from Oct. 21, 2009.

Welcome - I hope you find this sight informative and useful to you.  We have a lot of great members - both male and female, young and old.

Bucky
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Epson

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #3 on: January 10, 2010, 11:54:59 AM »
What's wrong with you women, this is the he man woman hates club, no girls allowed ;D  Don't make me drag you out of here by your hair.  Now, what was that you wanted to wanted to know my brother my :D

Patze

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #4 on: January 10, 2010, 02:04:49 PM »


Ah Epson,  if I typed what my little old brain came up with in response to your "threat", I'd get kicked off the board!    ;)  ;D   ;)  ;D    ;)   ;D    ;)   ;D    ;)  
« Last Edit: January 10, 2010, 02:29:26 PM by Patze »
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

Epson

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #5 on: January 10, 2010, 03:59:54 PM »
Patze,

Should I asume 'little'' and "old" are the key words in your post :D

Bucky

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #6 on: January 10, 2010, 04:22:06 PM »
Epson . . . . be careful . . .you DON'T want to get Patze riled up!!!  Be ye warned!!   ;D 

By the way Epson . . . don't you have snow to move with your snowblower instead of hassling the women here (who, by the way . . . WAY outnumber you men!!)!!   ;D 

(Don't worry Hehewuti - Epson rags on us women all the time . . we give it right back to him!!)   ;D

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Bernice

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #7 on: January 10, 2010, 08:30:55 PM »
I tried to stay out and just easedrop from the side like the rest of the women, but shoot yall men are moving too slow, yall need to come on and get this thread going, and give us something good to peep in on!!!!!!!

We can't have a decent conversation without you guys peeping in! SO COME ON WITH IT!!!!!!! I'M LIKE the 89 reader and still NOTHINGS BEEN SAID!!!!!!

MEN, STOP BEING SHY!

Epson

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #8 on: January 11, 2010, 11:50:54 AM »
I don't think that the symptoms for men are any different then women except a dry vajayjay and an over active blabber ;D

malew/sjogrens

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #9 on: January 11, 2010, 07:45:10 PM »
I too would like to hear from more men, but seems like most women are on this forum. There are probably quite a few more men out there but just don't visit this forum. Also, it would be nice if everyone would update their information at the bottom so we know age, gender, Medical diagnosis, and meds taken.

I was recently diagnosed in October 2009. I am on Plaquenil and am having chest pain and right side pain. My Rheumy has told me to get an EKG and CAT scan of lung. Bone scan reveled dark area around 6th rib which could be arthritis or lung inflammation.

My eyes are the worst. Very dry burning and stinging. Fatigue usually hits me hard around 3:30 p.m.

Joint pain has been bad except recently as took on week course of steroids and joint pain is better.

bob212

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #10 on: January 14, 2010, 11:20:35 AM »
I welcome the wisdom of females. :).    I think that Sjogrens is underdiagnosed among men since our disease tends to manifest itself in so many different ways and with different degrees of severity.  And us guys tend to avoid doctors more than women. It took me a while to try and find out why I was tired and headachy much of the time.

As for me (54y/o diagnosed Jan. 2010: my one year anniversary!!), my main complaint is fatigue that varies by the day and is only severe, fortunately, during flares.  Occasional brain fog and some funky blood work.  Not taking any meds yet.

malew/sjogrens

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #11 on: January 14, 2010, 11:34:42 AM »
bob12,

I read on a few websites that it tends to affect men more severely. However, my Rheumy says it affects each person differently and some women are affected just as severley as men.

Looks like you were diagnosed last January and have had it for a year now.

I mentioned the Sjogren's forum to my Rheumy and he said that he has gone out there and looked at it. He said that a lot of the information is not helpful as some of the people are not even diagnosed with Sjogren's or have been improperly diagnosed and is more of a vent forum. He said that a lot of the people have other issues besides Sjogren's and is hard for me to compare myself to them.

In a way I agree with him, but I do like going out here every once in awhile to look at the posts and see if there is anyone that has similar problems as me. Sometimes this forum really brings me down as it looks like so many people are struggling with it based on all of the posts. I just wish it was a more positive environment rather than all of the venting.

len

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #12 on: January 14, 2010, 04:57:15 PM »
I am a guy with Sjogren's. Diagnosed at 42, which was 5 years ago. I started with severe joint pain and went on and off prednisone several times which seemed to help. About 2 years ago dry eyes and mouth started with a vengeance.

Now my joints are under control with cortisone shots. I get them when I need it. Seems that a shot in any joint tends to help all my joints. My mouth and eyes are what bother me the most now.

I am on plaquenil. Eye tests show no problems with this so far. I have been on it about 4 years.
I also take salagen which helps generate saliva. It also seems to help my eyes. I take Theratears fish oil pills and also use on restasis.
I also take omeprazole for GERD, which from what I read may be related to Sjogrens.

I used Systane preservative free drops for a while, but as of late prefer Optive. At night I use Genteal gel.

len

lynnmarie219

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #13 on: January 14, 2010, 05:33:18 PM »
Hi from me too..... somehow I missed this thread!


I'm not a guy either but I just want to welcome you to Sjogrens World hehe and hope you find this site helpful and informative!

sad

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Re: Interested in talking to males with sjogren's syndrome.
« Reply #14 on: January 15, 2010, 05:59:29 PM »
Hi
I am a 46 year old male diagnosed in June 2009. I have been sick for 8 to 10 years.
I would like to talk with other males that have sjogren's.
Sjogren's seems to be effecting my whole body!
I suffer from dry mouth, throat, eyes and dry internal organs.
I recently started taking plaquenil but I have concerns about taking it.
It is hard to get good information about men with this disease because it affects so many more women then men.