Hello everyone. Wanted to introduce myself. I was diagnosed with Lupus, SLE, Sjogrens back in '92 after several miscarriages. Finally, after the successful birth of my daughter in '93 with Heperin injectins , my Lupus has been in check so far. (No daily regimen for maintenance, other than a daily low dose aspirin to keep clotting down.) Has anyone been tested positively, and been able to be somewhat sympton free (other than mild rashes, moderate athritic pain)for this long?
New to the sight...
1 - 7 of 7 Posts
I'm sure there are a lot of others out there much like you, we just don't hear from them very often on this website/message board because they are busy out there living their lives to the fullest 
I managed pretty well for 3 years after diagnosis with only joint pain, some fatigue, and occasional pleurisy. There are others that have had several years of full remissions as well. Congratulations on the successful management of your lupus for so long! Your post will bring a lot of hope to a lot of people.
Welcome to the boards!
I managed pretty well for 3 years after diagnosis with only joint pain, some fatigue, and occasional pleurisy. There are others that have had several years of full remissions as well. Congratulations on the successful management of your lupus for so long! Your post will bring a lot of hope to a lot of people.
Welcome to the boards!
Hello there and welcome to the site!
I'm not in your situation at all but as Maia said, We often don't hear from the people doing well
When you mention the clotting, miscarriages etc. is that not a problem with APS (Hughes syndrome) rather than lupus?
Many people with lupus also have APS. It's just that you didn't mention it. I have APS too and also take aspirin daily to keep that in check.
I hope you enjoy being here with us. It's always great to hear from people who have been dealing with lupus and everything that goes with it for some time. I'm sure you have plenty of experience to share with others.
Katharine
I'm not in your situation at all but as Maia said, We often don't hear from the people doing well
When you mention the clotting, miscarriages etc. is that not a problem with APS (Hughes syndrome) rather than lupus?
Many people with lupus also have APS. It's just that you didn't mention it. I have APS too and also take aspirin daily to keep that in check.
I hope you enjoy being here with us. It's always great to hear from people who have been dealing with lupus and everything that goes with it for some time. I'm sure you have plenty of experience to share with others.
Katharine
welcome rochmann,
i have had lupus for the past 20 years with no major problems. just chostochondritis which comes and goes. and occasional depression
also due to circumstances in my life. i never had the joint pain. i do
get very little fatigue but i think this is due to my weight in part.
take care, lydia
i have had lupus for the past 20 years with no major problems. just chostochondritis which comes and goes. and occasional depression
also due to circumstances in my life. i never had the joint pain. i do
get very little fatigue but i think this is due to my weight in part.
take care, lydia
Joined
·
8,577 Posts
Hi Rochman,
I imagine back in 1992 they weren't using the dx APS as widely as it is now. Are you being monitored by any doctors? I had a very long remission that occured after many years of disease activity. Pre-remission I worked 60 hour weeks and was very active until the year before remission. I came out of remission 5 years ago and have been on the sicker end of Lupus in that I am no longer able to work.
There are many other patients like you, some of them take Plaquenil to keep the Lupus quiet. As has already been said that type of lupus patient generally wouldn't visit a lupus website. I know that if the internet had been like it is now in the early 1990's I wouldn't have been active on a lupus site. It is nice to have people like you post on the boards here. It gives those that are newly diagnosed or in the diagnosis process hope that Lupus can be fairly quiet for some people.
Take care,
Karen
I imagine back in 1992 they weren't using the dx APS as widely as it is now. Are you being monitored by any doctors? I had a very long remission that occured after many years of disease activity. Pre-remission I worked 60 hour weeks and was very active until the year before remission. I came out of remission 5 years ago and have been on the sicker end of Lupus in that I am no longer able to work.
There are many other patients like you, some of them take Plaquenil to keep the Lupus quiet. As has already been said that type of lupus patient generally wouldn't visit a lupus website. I know that if the internet had been like it is now in the early 1990's I wouldn't have been active on a lupus site. It is nice to have people like you post on the boards here. It gives those that are newly diagnosed or in the diagnosis process hope that Lupus can be fairly quiet for some people.
Take care,
Karen
1 - 7 of 7 Posts
Join the discussion
