View Full Version : New to this forum but not new to Lupus

12-31-2007, 08:45 AM

As the title of this posting indicates, I have had Lupus (SLE) for quite some time. I was diagnosed with SLE at the age of 16 - I am now 27. During these last 11 years, I've had several complications (pleurisy, pneumonia, joint paint, seizures, fatigue, hospitalizations, etc.) but I also have had the blessing of many years of remission.

I graduated college, went to law school, traveled and lived in many places around the world, met a great man, found a not so great job that pays the bills. I felt, having faced many, many, many ups and downs with this f$!*ing disease, I had actually come to terms with Lupus. In fact, I looked at Lupus as a blessing rather than a curse - something that forced me to examine my life in a very mindful way, eat healthy and nurturing foods, get plenty of healing exercise, stay out of the sun, etc. - things that everyone really SHOULD do, but because of Lupus I HAD to do. And by doing all of these things I felt pretty good most of the time, for long stretches even great and "normal".

But in the last year and a half two new challenges have been thrown my way. I have been diagnosed with Discoid Lupus and have very large lesions on my scalp and I have lost a considerable amount of hair. I know it's incredibly vain, but this has been incredibly debilitating to my sense of self, and my sense of sexuality and beauty. I am a natural redhead (strawberry blond) and have always been told that my hair is one of my best features. All of that is now gone. I never wear my hair down, I always cover the top of my head, etc. Is anyone out there experiencing this type of Discoid Lupus? If so, how are you dealing with it? Are there any hopes of gaining hair back? I can't discuss this with anyone in my life, I feel such a sense of shame and embarrassment.

I had also been experiencing symptoms of lupus nephritis such as foamy urine, excessive weight gain (30lbs. in 2 months I think due to water retention - is that possible?), swelling, etc. so I had a 24 hour urine test done. The only part of the results my rheumatologist would discuss with me were the protein levels (I'm losing a little over 4,000 mg of protein per day), however in an early urinalysis she said there were also red blood cells in my urine. I'm scheduled to see a nephrologist but I'm really worried about what stage I might be in relating to Lupus Nephritis. I am also incredibly afraid of the treatment options out there for this condition. Does anyone have any advice? Does anyone know what this level of protein loss could mean?

I'm sorry about the length of this posting, I'm just really needing some help and guidance from people who understand what I'm talking about and feeling - the only person I've ever known who had Lupus died from disease complications several years ago. I can't believe this forum exists! I'm in a really dark place right now and desperately want to get out of it. I feel the more I know and understand, the less I will feel out of control.

If you've made it to the end, thank you. I would greatly appreciate an email or response. Thanks!

12-31-2007, 08:58 AM
Hi there!

I'm really sorry you are going through a difficult time right now. It sounds like you are doing everything you can to take care of yourself. I have had stage 4 Lupus Nephritis, was dumping more than 4500 mg of protein and kidney function was low. That was actually how I was diagnosed with Lupus 4 years ago. Now, my kidneys are functioning normally and things are much better.

I'm glad to hear that you are seeing a Nephrologist. It's always hard to be in a "no man's land" where you know something isn't quite right, but you don't know what that means. I hope that your appointment is soon in order to answer all your questions. I don't want to get too far ahead, before we really know what's going on with your kidneys, but there are several treatment options out there for people with Lupus Nephritis, depending on your kidney diagnosis. I, personally, was on immune suppressants (Cellcept) for 2 years and a bit of Prednisone. Now my kidneys are functioning completely normally. The only thing that reminds me is the fact that I always have to get up in the middle of the night to urinate.

I know the waiting is hard, but I will be thinking of you and hoping the best for you and your kidneys!

12-31-2007, 09:13 AM

Thank you so much for replying! The waiting is really hard, but it's SO good to know that there are people out there that understand me.

Your story is encouraging! All of this has been really scary. As soon as I started thinking about kidney disease I thought about worst case scenarios.

Is the weight gain I've been experiencing normal for kidney disease?

Can you tell me about some of the side effects for Cell Cept treatment that you experienced? Is in intravenously given? Could you still work while receiving treatment?

Sorry for all of the questions. It's just that until I get some definitive answers I feel like I'm in this black hole of fear. Thank you again!
- Lauren

01-01-2008, 06:23 PM
Hello ldrinker,

My Mom has diabetes and is losing her hair. We were talking because I am losing tons of hair. Interestingly, the hairstylist told her to use Nioxin shampoo and hair treatment or take 2500 micrograms of Biotin a day which would grow hair back. I hope this helps on the hair end.

I am sorry I have no experience with the kidneys so I can't help out there. I wish you the best and will be praying for you.

Take care and keep us updated,

Faith 8) 8)

01-01-2008, 08:09 PM
Just wanted to let you know I am new to lupus and to this site as well - You sound like a very stronge person and this is a great place to get answers and the advice you may be looking for - My advice to you is keep your head up and know this to shall pass....

01-02-2008, 09:27 AM
Girl I toooooootally feel ya!

I have not been diagnosed yet but have all the horrible symptoms~! the worst part for me is the lack of hair i have left! I too had always been complemented on my hair and how thick and lovely it is and now i have shoulder length brital choppy looking crap! I wear my hair down so i feel like i have some! ( sad i know)
I have been dealing wth these over whelmingly ugly rashes that seem to come and go when evrer they please and honestly i dont know if it is something that wil ever go away! I havent worn a short sleeve shirt in months! i dont like the looks i get, ( maybe im just way to self concious) but i know it looks bad and people have a way of making you feel like your gross!

I hope you had a good new year! my new years resolution is no more drinking! lol ( i have drank 3 times since august and guess what happend! a rash instantly! ) so this is not my choice but i figured i would tell everyone that it is my new years resolution! )

Im only 24 and this seems to be the end of my fun times.... it makes me sad... Im here for ya good luck