Men with Lupus

Brian_Mosher · Newbie Alert Joined: 05 Jun 2003 Posts: 4

Am I the only one? I was diagnosed in January and haven't met any other men in person or on line. I know we're rare, but I'd like to talk to another man in my position.

Make the day a good one!!!
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Brian M

Saysusie · Posted: Fri Jun 06, 2003 6:22 am Post subject: You Are Not Alone

Brian;
You are not the only man with Lupus. While the number of men who have been diagnosed is comparatively small, the number is increasing.
My dear friend, St. James, was also a moderator for this board. However, he had to step down due to the complications of his Lupus and I miss him greatly. He was a wonderful source for information from the males perspective! There are several junior members of the board who are men and I hope that they respond to your request.
My favorite saying, no matter who you are, with reference to this disease is: "YOU ARE NOT ALONE!!"
I hope that someone responds to you soon. In the meantime, I am here for support or to answer any questions that you may have!
Peace and Blessings
Saysusie

Brian_Mosher · Newbie Alert Joined: 05 Jun 2003 Posts: 4

Thanks Susie,

I know I'm not alone. I was until recently when I started reaching out online. There are no support groups in my area, so on-line will do till I have energy to start one.

I'm new enough to this disease that I'm still a bit in overwhelm about even knowing how to sort through all the articles, medications, and symptoms. I'm reading a lot and getting a list of questions to ask my Rheumy at the end of the month.

Thanks again for responding.

Brian
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Brian M

Saysusie · Posted: Sat Jun 07, 2003 7:21 am Post subject:

Brian;
Yes, the disease is difficult; both in its many symptoms, medications, contraindications, and causations. If you have one symptom, it could lead to three more which could cause two more sister illnesses connected with Lupus, which means more medications, which means more side-effects etc. It can be a rather viscious cycle. But, you are correct, there are so many support groups and, now, so much information available. It is no longer a silent and misunderstood disease, as it has been in the past!
I believe that men were always inflicted with forms of Lupus, but were always misdiagnosed! I am glad that docotor's are finally making the diagnosis and recognizing that men can also have the disease. One of the important factors of this illness is to treat it and begin to adjust your lifestyle in order to achieve (and maintain) remission!
Get Pleanty of rest, avoid the sun, eliminate stressors, take your medications, EXERCISE, watch your diet (cut out red meats, a lot of cheeses etc.). Be very conscious of taking good care of yourself
As always, if you have any questions or would just like to talk, we are always here for you!
Peace and Blessings
Saysusie