View Full Version : Hello everyone

11-04-2007, 07:25 AM
I am new and wanted to say hello. I was diagnoised with Lupus this summer. The Lupus has affected my kidneys causing protein to spill out into my tissues, which has created edema. I spent a week in the hospital due to severe edema that had gotten so bad it was in my lungs. I looked like I was 9 months pregnant and ready to give birth! I was miserable and had gained almost 40 pounds! Anyway, my Dr. has me on Prednisone and Cellcept and right now I feel so much better. He is cutting me back on the Prednsone and said he will eventually have me off of it. God I hope so because after dealing with the edema, now I have to deal with the effects of this medication. Anyway, I wanted to introduce myself and say hello because It helps to see what others have experienced with their personal battle of Lupus. God bless. Linda.

11-04-2007, 01:40 PM
Hi Linda_Sue :lol:
Welcome to our family. I can understand wanting to wean off of prednisone. Do bear in mind, however, that for some when the prednisone dosage is lowered, they have found that their symptoms returned. Sometimes it is suggested that patients stay on the prednisone until the symptoms are pretty much under control before beginning the weaning process.
This may not be the case with you. I just wanted you to be aware that it sometimes happens. You doctor has put you on Cellcept for several reasons, one being that you can take a reduced dosage of Prednisone with the Cellcept.
I am glad that you are starting to feel better. Please know that we are here for you whenever you have questions, need information or just want support or a place to vent. There will always be someone here for you. You are not alone!

Peace and Blessings

11-08-2007, 05:09 PM
hi linda

i hope your feeling good. how are you working and going to school? i give you lots of credit, i can barley make it threw the day with just house work or gardening. iam hoping to get my act together and exercise and diet. i know what your saying with the weight gain.
this is no lie, i was riding in a convertable in the back seat on a free way, i could feel my cheeks flapping in the wind. my face was so huge. its going down now iam on 10 mg of predisone. i take cellcept praqunil opps cant spell! 50,000 units of vitamin D once a week. i applied for social security today. it was hard because i really wanted to be a nurse. the stress of nursing school alone would put me in a flare. i made threw 2 semesters i was in a constant flare and thought it was stress. i was to know 18 chapters at a time on my tests. i grieved for the lost dreams. i thought i was just depressed but its kind of like a death of your dreams. having lupus has gave me a differnt out look on life. i was so close to death that i appreciate life alot more even with the daily pain. take care

11-08-2007, 05:58 PM
I know its really not funny but when I read about your cheeks flapping in the wind it made me laugh. Cuz I can relate to that! Well, I was very sick this past summer and spent time in the hospital. I had swelled up almost 40 pounds of nothing but fluid and it was even in my lungs. Since Dr. has put me on medicine and I have lost alot of that fluid I do feel better. I have had more energy in the past 3 months that I havent had in awhile. Now how long this will last I don't know but I hope a very long time. This morning I felt kinda tired and I was sick to my stomach but it passed. I know some symptoms are worse than others and this summer I cried alot cuz I felt so sick and so tired all the time. I am sorry about the nursing career and I know it is a real let down not to be able to follow ur dreams but maybe there are other interests you have and still be able to work with others...like social work. I think you just need to concentrate on getting better first and then see whats an option for you. I don't know alot about this Lupus thing...its all new to me but I understand that everyone is different with different symptions. I has a bad rash too, on my face,back, chest and arms. If my job wasn't easy on me I couldn't do it. I work with combat vets. I am the office manager. So I am able to sit or stand or go chill out when I need to for the most part and plus I have a wonderful boss who is very supportive. I am in school working on my social work degree but I am going part time. I do have to watch the stress of of it all though everyday. From reading what is on this web site I understand that things can change tomorrow if u have Lupus and thats a scarey thing to live with. Of all the coments on here I don't know why I was drawn to u? Maybe cuz of the liver ordeal u went through. I havent seen too many yet who has had liver problems even though I know Lupus can affect it. My prayer is that u will began to get some relief and to feel better, Take care.