View Full Version : Jersey girl, just dx with Lupus
07-31-2008, 06:02 AM
I just posted in the newly diagnosed section.
I somehow missed this introduction part of the forum.
I am 43, married and have one 17 y/o son.
I was just dx with Lupus after a 3 year dx of Multiple Sclerosis.....which by the way I always knew I did not have MS.
I no longer work and I am on permanent disability.
I have one dog and 3 birds, one that curses better then all of us! :lol: :lol:
Getting ready to start Plaquenil 400mg daily and I hope it works and helps me get back to feeling human again.
Hope to get to know you all better. I am spending my time lately joining Lupus forums and learning from people who have had this lovely disease for some time now.
Knowledge is Power and support is awesome.
I hope your all doing well.
07-31-2008, 10:47 AM
Welcome to the forum. My name is Kathy and I have SLE, Lupus for many, many years now. I got diagnosed at the age of 36 when I should have gotten diagnosed by my early teens. I kept getting the runaround big time by the doctors before I finally got diagnosed and then the Rheumatologist told me that I had the most classic case of Lupus that he had seen in years. I have been on mediations for the Lupus since 1994 and I will be 50 in December. You said that you are just starting to take the Plaquenil you know that the Plaquenil takes about 4 to 5 months for you to get the full benefit of it, but it is a really good drug for Lupus. There are a lot of good folks that comes in here that are very knowledgeable. Keep posting ok.
07-31-2008, 01:53 PM
Thanks for the warm welcome. It seems not many replies here. Maybe not a lot of users on this forum?
Anyway, I am hoping that the Plaquenil will help me get back to feeling human.
Spending the last 3 years taking drugs for Multiple Sclerosis that I DID NOT HAVE has left me feeling pretty ill to say the least.
My lupus has successfully attacked my CNS so the doctor is not sure but hopeful that Plaq will help me.
Anyway, so nice to meet you and thanks again for the warm welcome to the board.
07-31-2008, 03:07 PM
Welcoming you with open arms...
There are lots of users here, we come in waves depending on the activity of the disease or too.. life has brought us fun and Lupus is in the back seat...
From the forums I checked out, this one is very active...times slow on the weekends, family, children, spouses...but I find it to be involved, a wealth of info and well informed family members, personable, caring. I hope you find it to be that way too...
Have you been prescribed steroids too for you CNS involvement? Was/is it cognitive, vasculitis...headaches?
Plaquenil is used to treat mild to moderate SLE for rashes, skin, inflammation of the lungs (pleurisy) and heart (pericarditis) lining, fatigue and joint pain..
Most rheumatologists consider Plaquenil to be the first drug of choice for almost all lupus patients. It decreases the chances of developing more severe forms of internal organ damage, increases life span, decreases cholesterol, and can decrease the chances of getting blood clots. It is one of the safest medicines we have for lupus.
And as Kathy posted it can take up to 5 months for its full effect. For me, less then two months...
Again welcome to we have lupus....
Keep looking for you wellness.
07-31-2008, 05:13 PM
There are a lot of folks that post in here. Hang in there you will meet a lot more. I guess they work and things like that and pop in from time to time. I think it is sad that they treated you for MS and you never had that illness. That is scarey big time. Keep posting ok. We all care about you.
08-01-2008, 04:37 AM
Not that I am following you, but I thought it was about time I start looking into Lupus as well.
In my introduction, I posted that Lupus runs in my family. When I found out no one in my family had MS, just autoimmune diseases, I started to believe, what I was dealing with was autoimmune and not MS.
Glad to see you here. I also belong to another forum Sjogren's world which deals with people who have Sjogren's a kissing cousin of Lupus. There are many there who also have Lupus. You may want to check that forum out as well.
08-01-2008, 08:07 AM
Hello Karol and welcome -
I have been to many site for lupus, and this one is, by far, the best... Any information you receive here is very accurate, and the people are understanding and compassionate.
I was also wondering if you were on prednisone as well. It is almost always prescribed when there is organ involvement - like CNS. Plaq. is wonderful, but takes a long time to work. I have been on prednisone (low-moderate dose of 20mg daily) for two months, and am starting to decrease it as the plaquenil begins to really get into my system. Its been around 8 weeks now...
A lupus Dx is a very difficult one, and you will find here that most have had trouble either getting Dxd or misDxd. As lupus and MS are both autoimmune diseases, they are often confused for one another. Its lousy you had to take all those meds, but Thank God you are on the right track now...
Again, welcome, you will be glad you found us...
08-01-2008, 02:11 PM
Thanks so much for the replies and support.
NO, I was not prescribed prednisone as I can not take it.
Thanks to Lupus and organ involvement I lost my entire stomach last year. It was removed surgically due to irretractible ulcer disease and dead tissue.
Anyway, I can not take steriods because it can cause more harm to my GI tract.
They will try Plaq first orally, then IV and if that does not work possibly Cell cept or Cytoxin.
I am a tricky case since I do not have a stomach but I have faith that my Rheumy doctor will figure it all out.
Honestly, I am just grateful to have a correct diagnosis. The rest will fall into place.
Hi Gerri, funny that we always run into each other.
08-01-2008, 04:43 PM
Oh my gosh,
Thats horrible about your stomach!! And, yes, thank God they are on the right track and your rheumie sounds like they know what theyre doing...That, unfortunately, is not the case in many cases!! Im glad you found us, its such a great site here, and the people are so empathetic and informative...again, welcome!
08-01-2008, 05:44 PM
And again Thanks lauri, from the bottom of my heart. :wink: