Medical Questions > Conditions and Diseases > Lupus Forum

Introducing Myself, Long Post!

Hi, my name's heidi and i'm 21 years old. I was recently diagnosed with lupus in november 05. It was pretty sudden, I wasn't feeling to good in october and had some swelling and joint pains. I never had any serious illnesses before, and when it didn't go away I went to see a doctor. After two visits, and the swelling and pain getting worst. The doctor ordered some blood tests, but the results took a week. I didn't even make it that week, I was in so much pain I went in to see my doctor again. Not all my labs were back yet, but the ones that were showed up abnormal. I was also very anemic. Not sure what was going on, my doctor told me I needed to be admitted into the hospital immediately. I was then hooked up to an iv and changed into a hospital gown awaiting the ambulance.

I was then transfered and admitted into the hospital down the street. When I first arrived, they still weren't sure what was going on. They told me I either had rhumatoid arthristis or possibly lupus. I had no idea what lupus was, and no one in my family has it either. My first night at the hospital, they ran a bunch of tests. And I found out I had an ulcer from all the anti-inflammatory meds. My legs, and arms were like balloons and I could barely walk or move. I stayed in the hospital for five days and I was diagnosed with lupus. I also had issues with my heart rate and breathing. On top of all that, I had a urinary tract infection. I was put on iron tablets, prednisone, prilosec, cipro, and lopressor. After a week in the hospital, the swelling went down and I was feeling/doing a lot better. I was released from the hospital.

I was only home for a day, when I woke up the next morning having trouble breathing and my heart was racing. My mom brought me back to the er. Apparently, I wasn't given enough prednisone even after I asked my doc if all my prescriptions were correct. Without the meds for a day, it threw my body off course and I went into another flare. This time, I stayed 4 days. Then I got my correct medication, and I was doing feeling better again. I got to go home.

But a week later, I woke up again with trouble breathing. This time, I had chest pains and it hurt to breath. I was rushed again to the er. They ran some more tests, and scan's. It was a little bit different this time though, they found a blood clot in my left lung. After some more blood tests, they found out I had the antiphospholipid syndrome. Blood clotting issues. I was put on lovenox shots that I had to take on my stomach twice a day. And coumadin was also added to my prescription list. This time, I stayed in the hospital another four days and was released on thanksgiving day.

I haven't been back into the hospital since, except for doctor visits or blood tests. Through the whole ordeal though, I lost a lot of hair to the point where you could see my scalp. I even got a few wigs, and i'm happy to say though my hair is starting to grow back. So I am excited about that.

I have been feeling a lot better lately, but just got a new medication added to the mix today. I'm currently on; prilosec, prednisone, plaquenil, lopressor, coumadin, and the newest cellcept.

I also have a appointment next week to see a dermatologist, because I have a horrible rash on my face. Anyone have any suggestions for that? It's soo itchy and dry that I don't know what to do. The sun makes it worst too, and i've been wearing sunblock or staying indoors.

Anyhow, sorry for the long post! I just thought i'd introduce myself, since i've been lurking on this forum for a while. It's definately nice to meet other people who understand lupus and all the medications. It's somewhat hard talking to and explaining it to my family because it's all new and i'm not quite sure they really do understand even though I know they try.

Thanks for listening.
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replied June 2nd, 2006
I'm New to This Forum Too
I'm new here too, but i've been dealing with my lupus for a few years now. I've only recently begun to develop the butterfly rash on my face and have found that using a lotion that contains zinc and a high spf sunblock for face specifically, have really helped me.

If in doubt, put in a quick call to either your dr or your pharmacist. They are there to help. It's what they are trained for. I have a great relationship with my pharmacist and he has been a great help finding lotions etc.

Take care of yourself
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replied June 12th, 2006
I am new to this forum too. I was diagnosed with lupus almost two years ago and have been struggling to find some answers since! I seem to have a milder case than you, but I thought I would share with you my findings, maybe they can help you too.

I have flet from the beginning of my symptoms that food affected this disease in some way. Often eating certain things or eating too much made my inflammation worse, etc...I always felt bloated and uncomfortable, and very very rarely had any bowel movements. So I started researching diets and auto-immune diseases, specifically lupus. I came across one womans story that led me to a Dr. In nj named Dr. Fuhrman. Fortunately for me I live in nj so I have been able to visit him. He has put me on a strict diet, that I have been following for about 3 months now. So far I feel great! And I have reduced my meds (plaquinil)..With the goal to eventually be off of it all together.

I am not saying that diet should necessarily replace your medication, but I do know that it has worked for many people, and is worth looking into. It may sound crazy, and I know that most doctors do not believe that your diet has any affect on your lupus, but it doesnt seem like they know much else about this disease either! I suggest that you check out Dr. Fuhrman's book "eat to live", and consider if it might help you. There is lots of information out there about the whole diet-autoimmune issue....Worth doing some research.

So far, it has helped me, and I hope that by sharing my info it might help someone else!
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replied June 18th, 2006
I have been in remission from lupus for two years but I had a long battle with lupus.

I too recommend dr fuhrmans book "eat to live". Nutrition is of utmost importance. You might also read "the china study" by t. Colin campbell...Its a very important book which comprehensively covers the implications of diet and health.

Whether a person is dealing with a chronic illness or not I suggest they cut out processed foods, soda and artificial sugar...Go easy on the red meat.

Pam murphy,b.S.,rrt
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