View Full Version : Hi & Help

08-10-2013, 01:11 AM
Hi everyone! I'm new to the group and I'm seeking support from people who has gone through what I am going through now. After hours and hours of researching on the internet trying to make some sense to all that's happening to me, I found this forum. I'm glad I did cuz finally I have somebody with first hand knowledge of this disease other than my doctor that I can talk to. I was diagnosed with SLE a month ago and my doctor prescribed Plaquenil. It started in 2009 when I noticed unusual hair fall but didn't give it much thought since my hair was long and thick. As months pass I noticed that when I tie my hair into a pony it doesn't feel "right" anymore. Now after 4 years i lost at least 50% of my hair volume. I always tell myself its only hair but its easier said than done. Now I'm struggling with mild depression since my rheumatologist said that it is not advisable to try for a baby cuz my SLE might worsen with pregnancy. I suffer from APAS (anti phospholipid antibody) during pregnancy in which my antibody recognises the fetus as "foreign" and attacks it causing miscarriage. After 2 miscarriages, I had a healthy baby boy now 8 years old. Would somebody share their experience with pregnancy with Lupus and did flares worsen during or after pregnancy? Also would my hair EVER grow back? Does Plaquenil help with hair regrowth?

08-10-2013, 01:32 PM
I believe that I had lupus before my pregnancy. I had rashes, lesion, fatigue horrible migraines and hair loss. Well after I had my daughter things became worst with weight loss, bone pain, limb numbness, knees swelling etc. I have seen lupus flares making some women sicker than before their pregnancy. It is just all up to you and your dr. If you can get in remission, and stable then if that's what you really want go for it. Don't let any ones stories scare you away because we are all different. I know for me I do not care to have more children and the thought of possibly passing another AI off scares me. Not to mention I wouldn't take my medicine so I can only imagine the consequences of that. If its ment for you to carry more children you will. And as far as my hair, it grew back almost over night and thicker for some reason

08-10-2013, 08:38 PM
Hi Leaniebean, thanks for sharing your Lupus experience with me. I am encouraged by your experience with your hair. Did it grow back after medication or did it just "magically" grew back?

08-11-2013, 05:49 AM
It just magically grew back. I can't explain it because it doesn't make sense. This time last year my hair was thin and barely in my chin area. Now my hair is thick and almost to the middle of my back. My aunt was teasing me and saying it grew back like a cancer patient.

08-13-2013, 05:30 PM
Thanks Leaniebean - I am hoping againat all hope and keeping my fingers crossed that mine does the same "magic" & the Plaquwnil I'm taking now will do more good than harm. Thanks again!