View Full Version : New to here and had a few ?'s

06-16-2009, 07:13 PM
I was diagnosed while I was pregnant with my 1st child so it has been 11 years. I do see my rheumatologist every 4 months and she is on top of everything, but I honestly for me don't seem to feel like having lupus is a major thing. I have read others stories and understand it is and can be. It causes me to have joint pain from time to time and sometimes quite painful (not too painful that I can't do things really), and get rashes especially from the sun, and probably the main reason for me seeming so tired mostly all the time. Because none of these things are life threatening to me or debilitating, so I think that is why I feel like it isn't a big thing for me. Like I said I know it can be and have even heard of people dying from complications of lupus and stuff, what I am wondering is...are things probably going to get worse as I get older? Can something all of the sudden go terribly wrong? How do the doctors really know it isn't affecting any other organs or causing damage? (I guess the blood test tell, but I always feel like how do they really know) I have kidney problems (again, nothing to severe) that they say is unrelated to my lupus, what would they look for if my kidneys started to be affected by the lupus? My doctor said that because I have sjogrens also that I am less like to develop more serious complications from lupus...is this what others have found? Am I just lucky to have SLE but not have it too bad? I have never really talked to other people who have lupus, but I also feel like I almost don't have a right to complain or really talk to in depth about it because I am not affected as seriously as alot of other people are. Thank you so much for reading this, sorry it's so long and prayers to all of you who are dealing with this on a much more difficult level than I am.

06-16-2009, 07:21 PM
hi carrie and welcome to the group.

thank goodness your SLE is being successfully managed. With three little ones, you have your hands full.

does your dr. have you on any meds?

I have not heard that having sjogren's can decrease lupus symptoms, so i can't really comment on this statement by your dr.

Lupus is a progressive disease, but some people enjoy a period of time where the disease is in remission. My symptoms started when i was young, but i then enjoyed several years of little or no symptoms. Then, about 13 years ago they returned and have recently really affected my daily life. Lupus is very individual, and affects people differently. Hopefully, your case is where it will always be, and you will cruise through life without too many difficulties.

enjoy your little ones, and let us know if we can every help.

06-16-2009, 07:22 PM
the only thing I take for lupus is 400mg of plaquenil each night and very small dose of prednisone - 5 mg each day. Also, I know that you should have eyes checked every 6 months when on plaquenil but I unfortunately don't usually do that...what are the problems that plaquenil can cause? And I am going to go this or next months to eye dr.

06-16-2009, 08:44 PM
Thanks so much Phyllis.
When I was a teenager I always had sensitivity to the sun but didn't have the joint pain, so I think that I have had it for quite a while and hopefully it continues to stay the way it is. I think I am always thinking things may get worse because I seem to have so many "little" things wrong with me I just feel like what else is going to go wrong, but for as much as I feel like there is more to come I don't really let it worry me too much. 2 of my 3 kids have their own issues that keep me pretty busy and as long as I take care of them and make sure they stay relatively healthy and happy that is what I really care about. Autoimmune issues can be such a trial but it could always be worse. Thanks again.

06-17-2009, 02:39 AM
First of all, Plaquenil can lead to retinal damage, so it is very important to have your eyes checked every 6 months and have a visual field scan done. Also, having Sjogren's syndrome causes extremely dry eyes (and mouth) and that can lead to eye problems.
I was just diagnosed with Sjogren's yesterday and my new rheumy told me that people with secondary Sjogren's are less likely to have major organ involvement but are more likely to have lymphoma at some point because your immune system affects the lymph nodes causing cancerous tumors to grow.
Also, fibromyalgia affects most of us when the disease is in a remission phase and can be just as painful or even more so.
Like you, I have 3 kids and really don't have the time to be exhauted by the disease so I just keep pushing through the fatigue. I also work full time on night shift and my sleep pattern is bizaar to say the least.
As for your symptoms not being that bad, that is great and I am very happy for you. It seems the older I get, the worse the symptoms get. I am 38 but feel like I am 138 sometimes!! I hope that your symptoms remain tolerable, but please, get your eyes checked!!
Good luck to you and please keep in touch!

06-17-2009, 12:50 PM
Hi Carrie,
I was much like you as a young mom. I have raised 5 children. I also noticed lots of little things that seemed wrong for most of my life, but was too busy being a mom and military wife to pay much attention to all of those little symptoms.
Now I'm 51, and it is really affecting my life. I was recently diagnosed with Mixed Connective Tissue Disease, and I tested positive for Lupus, RA, Psoriatic Arthritis and Sjogren's. I also have Spasmodic Dysphonia, Meniere's and osteonecrosis. I think that it all just added up over the years. You're lucky to have an early diagnosis and that you are already on treatments. Hopefully, you can avoid the accumulated damage that I think I have.

06-18-2009, 06:02 PM
Thank you all so much... And I'm gonna make my eye dr appt tomorrow.

06-19-2009, 07:39 AM
Hey Carrie...I'm Carrie, too!! You even spell it "right"...hee hee. :)

Welcome to the board...God Bless you being a Mom of three AND having to deal with all that's on your plate! I just have one, and it's all I can do some days!!

I know you'll find lots of support, friendship, and compassion here...I know I have!!

You'll find that people who pass from complication from Lupus usually were not under the care of a rheumatologist, or were not following their medication regimen properly. With good care of your body, meds, and followng doctor's orders, you can lead a long, productive life. Don't let it worry you..but definately make your rheumy your best friend!!

Am looking forward to getting to know you better!

06-19-2009, 12:13 PM
Welcome Carrie!
Glad to hear you don't have any severe issues with Lupus...great news! Lupus effects us all in different ways and degrees and nothing for you to feel bad about. Sounds like you have a positive outlook on Lupus/life so I believe mind over matter so...getting older and having complications depends on your thinking and faith!
Welcome again!

06-23-2009, 07:33 PM
Thank you all again so much...I is so nice to know there is a place to come to, to ask questions and get answers from people who know what you are talking about...Thanks, not that I have much time, but look forward to getting on here and checking in from time to time.