Hello :D Has anyone experienced hair loss? I have tried multiple hair products to help growth but it hasn't helped. I have also been taking vitamins such as biotin that is supposed to help but it hasn't been helping. My rheumatologist said that it could be because of the lupus and arthritis but she didn't mention other way that can help with my hair loss. I also went to a dermatologist and she gave me shampoo to use called ketoconazole but she said that's if I have fungus but that hasn't helped. Does anyone have any suggestions? Thank you
Hello Samantha, I am sorry to hear you have had such struggles with hair loss. I noticed you mentioned taking biotin. What dosage do you take? I also take biotin but found that unless I take the 5000 mcg, it didn't really work well for me. Just a thought. I have also heard of shampoo that contains biotin as well that has been helping others but I have not tried that yet. I hope some of those ideas help you. Best of luck!
Lisa
Are you taking steroids for your lupus? hair loss is a by product of steroids. Vitamin D is good for hair growth among other things.
I lose my hair on a daily basis, in the tub and in my brush. Have been for year’s it’s just getting thinner and thinner all the time. If you get a solution please let me.know
Hi Samantha,
I'm sorry to hear about your hair loss - I experience it as well. Since I was diagnosed two years ago I have experienced intermittent periods of hair loss, unrelated to medication changes, or anything else for that matter. In the beginning it was really bad, clumps of hair coming out when I washed it, hair everywhere in the bathroom. Then it stops for a while, then it starts again but it hasn't been as bad as that first round of it. The only med I'm on now for Lupus is Plaquenil.
My dermatologist recommended Rogaine for Women and I use that religiously. She said that it may also help save the hair you have, as well as encourage regrowth. I have seen some regrowth - nothing compared to what I have lost - but at least its something. I also take biotin. The ketoconazole shampoo is great for dandruff - but I'm not aware of it helping hair loss unless it is specifically due to the fungus.
I've also started using shampoos with biotin and have increased my daily dose of Vitamin D and Magnesium - both of which got extremely low when I was first diagnosed. The vitamin sections of the stores now seem to have vitamins targeted to hair, eyes, nails, etc. Of course I grabbed a bottle of them too, lol. Can't hurt! don't know what helps and what doesn't, but right now my hair is pretty stable, so I'm sticking to it!
I think if you go in the archives on this blog you'll find extensive discussions about hair loss and the various things people have tried.
Good luck!
I have been experiencing the same thing. At first I wasn’t concerned because my hair is thick and I had alot. However, I’ve been noticing considerable thinning and am also very concerned. I will definitely try your suggestions Nikki.
I am very fortunate in that my hair was very thick. I can tell you it was a terrible shock when I saw "holes" in my hair and I could actually SEE my scalp! I've never been able to see my scalp!
The bad part of that is that when you complain about hair loss - especially to someone with thin hair - they look at you like you're out of your mind.
My dermatologist recommended zinc. She said it much surpasses biotin for hair loss. She also recommended men’s rogaine for Caucasian women. She said the women’s rogaine works better for women of color.
OMG! Each time my hair is brushed I have to clean my brush because it fills up. My hair is a light blond so that helps to ‘hide’ my scalp. My long hair has thinned considerably and I have thought about cutting it short.
If anyone has advice, I’m listening.
Hair loss is often a main symptom of lupus that prompts the Dr. to look for lupus. If you go to the upper right hand corner to the search box, and type "hair loss", you will see many other discussions about this, with things that helped people. Mane 'n tail conditioner helped mine grow back. You can buy it at most places where there is a good selection of shampoo. It is made to help horses bald patches quickly grow back in before a horse show. You don't use it like regular conditioner though. You put a dab in your hand the size of a nickel, and take fingertips of the other hand to rub it directly onto your scalp and roots. Not throughout all your hair. Then you sleep with it on and shampoo in the morning. I only had to do it 2 - 3 times a week to get my hair back. I learned about it from people who used it for cancer hair loss.
Best wishes!
Hi Samantha,
I am sorry you are experiencing the hair loss and I feel your pain. If I may share....when I was first diagnosed, I lost over half the hair on my head. It was demoralizing. Over time, with medications (Plaquenil and Methotrexate), my situation gradually improved. The most improvement came from Biotin....between 5,000mcg-10,000mcg and Folic Acid...I take 5mg/day. Also, Vitamin D3 5000IU/Daily. It has made a dramatic difference. I still have episodes of thinning or 'shedding' and have less hair than I had before I was diagnosed, however, I have 50% more than I did when I first loss my hair. God Bless and I really hope this helps. The shampoos did not work for me, but I wouldn't rule them out.
Hi everyone,
thank you so much for your responses! I currently take 10,000 biotin and will start taking Vitamin D. I used to use the horse shampoo but it made my hair extremely tangley but I will try again and use the conditioner as advised... I will keep you updated and thank you so much for all the support, it really means a lot.
Hi, I’m going thru the exact same thing. My hair was down my back and now above my chin. I’m grateful for the responses as well and will try some stuff. Thanks
Hi , I lost my hair over 20 years ago, never had any luck with any product. I have discoid lupus, I am almost completely bald which is very depressing, thank God for wigs.. Pray everyday for just a little hair growth, but not going to happen. Wish for a miracle.I wish everyone the best of luck.
Nikki, Please be careful with taking a lot of vitamins. Talk to your doctors about the ones you are taking or the ones you want to add. To much of some of them can cause problems and also getting to much can cause a reaction to any meds you are on or make some conditions worse.
Nikki said:
Hi Samantha,
I'm sorry to hear about your hair loss - I experience it as well. Since I was diagnosed two years ago I have experienced intermittent periods of hair loss, unrelated to medication changes, or anything else for that matter. In the beginning it was really bad, clumps of hair coming out when I washed it, hair everywhere in the bathroom. Then it stops for a while, then it starts again but it hasn't been as bad as that first round of it. The only med I'm on now for Lupus is Plaquenil.
My dermatologist recommended Rogaine for Women and I use that religiously. She said that it may also help save the hair you have, as well as encourage regrowth. I have seen some regrowth - nothing compared to what I have lost - but at least its something. I also take biotin. The ketoconazole shampoo is great for dandruff - but I'm not aware of it helping hair loss unless it is specifically due to the fungus.
I've also started using shampoos with biotin and have increased my daily dose of Vitamin D and Magnesium - both of which got extremely low when I was first diagnosed. The vitamin sections of the stores now seem to have vitamins targeted to hair, eyes, nails, etc. Of course I grabbed a bottle of them too, lol. Can't hurt! don't know what helps and what doesn't, but right now my hair is pretty stable, so I'm sticking to it!
I think if you go in the archives on this blog you'll find extensive discussions about hair loss and the various things people have tried.
Good luck!
Doggie, thanks for the concern! I’m aware and keep my docs updated. So far no problems. I worry more about herbal supplements - I find docs aren’t in agreement on potential impact, so I avoid them.
Thank you, Doggie, for the important reminder.
Hi Samantha, I have been experiencing hair loss for about 5yrs now. I have several autoimmune diseases and take plaquenil, Coumadin and 9 other prescriptions along with about 9 vitamins and supplements. The doctors blamed it on stress because my husband died right before I started losing my hair. I have tried EVERYTHING without success. I am blessed to have a hair dresser that specializes in thinning hair and hair loss. I recently purchased a Theradome to the tune of 900.00. This will be my last attempt to at least save what I still have. It has been FDA cleared and used in Europe for many years with various degrees of success. I have been using it for 3 months and the loss has slowed. My stylist takes pictures every time I go in, she has many clients using the Theradome. I am hopeful at best. Check it out online and see if it might be for you. I had 2 scalp biopsies and one came back as autoimmune related and one was just female pattern hair loss. I feel that I may never date again because of this terrible situation.
Hi Samantha I know what your going thru that’s the first thing that happened to me after the skin rash and blisters healed my hair started falling off by the handfuls the medication we take the plaquenil the prednisone and the celebrex also makes your hair fall off I take biotin and folic acid everyday folic acid my rheumy prescribes 1mg twice a day and my hair has been growing back slowly but surely thinner than it used to be but it’s growing yay. Also the sun makes your hair fall off so buy a shampoo and conditioner with sunblock in it that also helps so much best of luck God Bless.
Sorry couldn’t remember the name of the shampoo and conditioner it’s called Nioxin It’s really good you have to buy it at a hair stylist type store like Armstrong and McCall type or Amazon it’s cheaper I don’t know what other type there might be in your area wherever hair stylist buy their products that’s where they should have it. It’s a reaally good product it worked for me so I hope it will work for you get the one in a brownish bottle for thinning hair or fine hair there is a kit that includes a type of moose that you apply after towel drying your hair for extra sun protection think that helped me the most best of luck let me know if that works for you.