Life With Lupus

Hair Loss

I have been losing a lot of hair for the last few months. My hair is blonde so it is already fine and thin. I was wondering if anyone has tried Minoxidil topical solution to try and help the hair that is growing back or from falling out so much ?

Biotin is a vitamin you can buy in the drug store. It’s supposed to strengthen hair and nails. Prenatal vitamins are useful too. I’ve heard of a lot of side effects from minoxidil and rogaine .

My hair is just like yours. I have never used Minoxidil but I take a Biotin supplement (6,000 mg a day) and it helps a lot---with nails too. However, if you are using steroids, my experience has been that I was almost fighting a losing battle....but I didn't take them for too long so my opinion is limited. Go to your local health food store for a little guidance. Biotin supplements are reasonable---you can even get them at Sam's or Walmart. I am 61 and have always had fine, blonde, hair and it wasn't much to start with! It thins out as you age---without lupus. Also there are excellent thickeners for hair that help with the "illusion" of large hair. Try to go to a beauty supply for advice and better product selection. Don't wash your hair everyday, either! Best wishes in your search for better hair! LupanCatwoman P.S. I believe everyone with Lupus should own a vitamin/mineral/herb supplement directory as well as a big "pharma" pill book. They don't cost much and sure do help you know your meds and other alternative treatments.

I am not yet diagnosed. Just given Autoimmune disease and fibro diagnosis. I am being treated though- thank God! Plaquenil, prednisone, gabapentin, wellbutrin, klonopin, and pain medication. I am 35 and very self conconscious of this side effect. I pull my hair back/ up almost every day so that it is a mirage effect. Even though my pony is skimpy… Lol. I do this because i only wash every 2-3 days as mentioned. wash day down- next day or so up. I am feeling your pain with you, and thanking you for asking this question. I did find that prenatals worked some for me. Now I don’t lose clumps, just shed. I lose lots in the shower when washing my hair and unfortunately it is everywhere in my bathroom etc. I will now only use a pick or very wide toothed comb. I also switched to Wen shampoo in the last 6 months or so and WOW what a difference. I even use the Wen oil a little in the morning and a fair amount before bed. I may be shedding some, but the hair i have left looks beautiful and healthier then it ever has before. I haven’t even gotten a trim in those 6 months for the lack of split ends!!! Please KUP on your decision on what you choose to use and your results. Hugs :slight_smile:

I have lost so much hair that I now always wear a wig. I have/had very fine blond hair so I understand what you are going through. I used minoxidil in the early 80's and it seemed to help. As the years went by with flares and stronger meds the loss became extreme. As a professional I needed to look sharp - hence the wigs. Now I have fun with them. I am currently sporting long, thick abundant hair that makes me feel happy.

I suggest that you try the treatments, it may work for you. When/If you decide to opt for a wig don't get a cheap one - you'll feel worse. Save up for a custom made one. Usually a cancer enter can recommend someone.

I had some reactions to Minoxidil, so I went to Fantastic Sam's. They have a product called Revita. It is pricey ($30), but really worked well. They also have a leave-in treatment that you can use together with the shampoo. You have to use the shampoo for a month before using the leave-in. I really liked both products. Hope this helps...



Thank you everyone for your answers. Now I have different things to try. I hope they help me.

Love you all, Kathy

Hi… I have antipspholipid for 26 yrs and as soon as they increased my coumadin my hair started falling. I slowed it down by taking propecia and using the 3 step Nioxin treatment along with a scalp exfolliation by Nioxin every 2-3 months. Keeping my fingers crossed. Good luck to you. Hope you find something that works for you.

I started losing my hair at the age of 12 and was diagnosed with Alopecia Areata then. My hair loss came and went over the years. I continued to have patchy hair loss, even after being diagnosed with SLE. About six years ago, my hair started changing consistency. It got really dry and began to thin out again. I tried to keep using the minoxidil. Because I am also a Type 1 Diabetic, steroids (which had been effective in treating the hair loss before) were not an option for me. My hair was also breaking off, which was new. I have now lost all of my hair, including eye lashes, brows, and body hair. The cool thing is that I don't have to shave my legs or arm pits. My friends and coworkers often tell me how they envy me for having perfect hair and being able to change my style so frequently. I'm glad they are being nice, but I have some major issues with the fact that I now have to wear a wig. You'd think I would have adjusted, as I have been completely bald for over 5 years now. My Rheumatologist thought the Plaquenil might help my hair come back, but it didn't. I would just love if I had even a little spontaneous growth. :-) I also continue to take Vitamin D, Calcium, and Biotin (which did help my hair strength and growth and also helped my skin and nails). I think most of us with SLE tend to have brittle nails that crack and break easily. I try to keep mine polished a lot, too, because they tend to turn a yellow tint.

I am on nioxin and it seems to work better, smells better too. I also had all 4 of my thyroid levels checked and started synthroid that seemed to help too! God Bless and good luck.

No. I have just acepted the fact that my meds are the culprit but I need those meds. Whenever I am off the meds, my beautiful blonde hair comes back, but my pain is intolerable. I chose being well, even if my hair falls. My loved ones know this and appear to accept it with me. If I had cancer and was on chemo it would have the same effect. My daughter just tells other people I am on chemo.

Xena, minoxidil in women only prevents more loss, and as is quite toxic. WHen you stop taking it, your hair fals out again. I also use biotin and Nioxin as the other ladies mentioned, but what worked best for me was a conditioner from Walmart called Mane 'n tale. It was made for horses, to grow hair quickly for shows so they don't look patchy. Even cancer patients have had success with it. The way you use it is to pour about a nickle sized dab in your hand, then with your other hand's fingers, rub it only into the roots, not all your hair, and sleep with it in, then shampoo in the morning. Even just using it 2-3 times a week, it brought back my alopecia bald spots that were never supposed to come back. Now due to thyroid, it's falling out again, I need to buy more because I think it worked better than the Biotin and nioxin.

Thank you so much I will definitely try it.
Sincerely, Xena

Sorry it took so long for me to read your advise, but I have been having trouble with the site.

I was losing handfuls of hair every time I washed it. Out of desperation, I switched to Dr. Bronner’s castile soap. It worked. My hair stopped falling out and even started filling in. It’s not nearly as thick as it was, but I’ll take it! Any castile soap should work, as long as you don’t use regular conditioner with it.