View Full Version : Newly Diagnosed with Questions

08-02-2005, 09:28 AM
Hello Everyone,

I am a newly diagnosed Lupus patient. I was diagnosed with SLE in May. The same day I was diagnosed with Lupus...I was admitted to the hospital because of my Kidneys - I was about 3 days away from Kidney failure (WOW SCARY) and I also found out I had 2 blood clots (ROUGH RIDE that month...wow). Currently, I am on tons of medication and I am feeling alot better...however, I am experience a ton of my hair shedding. I feel like my hair is thinning incredibly. I have told my doctors several times...and honestly I feel like they don't take my seriously. It is driving me crazy. I am trying Nioxin to see if it helps. My hair length is a little past my shoulders and I am debating on cutting it shorter. I am also taking Vitamin B (folic acide) because that is what the doc told me to do. I am so worried about it - I am getting married in October and wanted my hair to be beautiful and long and thick and pretty but as of right now it doesn't look like it's going to happen. Has this happened to anyone else? Anyone have any suggestions or advice? How long does this typically last?

Any help or insight would be great!


Kim T.
08-02-2005, 11:01 AM
Hi! Yes, losing hair is a common occurence with Lupus. Between the Lupus and the medication that you have to take does make your hair thin out quite a bit! I am not a doctor, but I have experienced this too. It is scary seeing that amount of hair loss.. I don't know how much you will keep losing, but you may want to talk to your doctor. You may need to think about alternatives, (wigs or hairpieces). I hope this helps a little bit. You are not losing your mind... I am so sorry to hear about how sick you are and that your kidneys are involved. Please listen to your doctors and take your medicine and like your doctors say to. Take it one day at a time and you'll do just fine! Hugs. Kim T.

08-02-2005, 11:29 AM
Thanks for the response. I am worried about it. It isn't that bad yet even though I see a ton of hair coming out. I still see little baby hairs coming in. It just worries me that it is not coming in at the rate I am losing it ya know? This is a whole new experience for me and it is a lot to take in all at once. I just want it to stop falling out like it is. I am new to all of this so I am still learning and it really is a lot to take in. I don't want to have to think about wigs or hairpieces. I just want to keep hoping that it will grow back or stop falling out and I won't have to worry about it anymore.

08-08-2005, 06:35 PM
Hi. I totally empathize with you regarding the hair loss, I, too, am filling the drain-am totally freaked out that my hair is falling out at such a rate, I actually am amazed that I still have any. I can just be walking and hair just falls from my head. It is a disquieting feeling. It drives my family crazy to find my hair everywhere, I try to keep up with it but it is impossible. I have not seen a doctor but will try the vitamin B. I have also heard that a boron deficiency might be to blame. Good luck to you, i feel your pain. :)