If anyone could give me any advice on this question I would really appreciate it 
Is hair loss normal at this age with lupas? How do you know if you have hair loss cos we lose hair everyday but when should u start to worry/notice... are thefe any good shampoos or natural remedies?
Sorry for all the questions
Cherry, I never (very rarely) lost hair until about 10 years ago. Suddenly I’d get enough every shampooing to roll into a ball (small ball, but still a cause for concern compared to normal). My stylist told me to start using a Ovation Hair. The very first use softened my hair up and made it so much healthier. It’s not completely stopped the loss, but it’s cut it down and made new hair grow in fast. A good tip to try too is the Ovation (exactly as instructed) and Biotin supplements, as well as rogaine. My sons call that a hair cocktail. 🙃I hope it helps you.
Thank you I will check it out- do you know why we get lupas? Like docs said i have always had it in me something just triggered i but no one jn family has it...
Cherry, there can be so many different reasons to getting Lupus. Some, genetic, with some it was induced many medication. It can be environmental factors. Some are born with it. I don’t think the science has figured it out 100%.
Hi Cherry,
I was diagnosed with SLE only 6 years ago aged 58 following a severe reaction to a drug called Terbinafine. BUT they think I’ve had it all my life most probably triggered by Measles which I had at the same time as double pneumonia as an infant. 😩 Viruses, hormonal changes eg at puberty or following pregnancy, and drug-induced are all known causes/triggers for Lupus, but having a genetic predisposition is also thought to be common. Has anybody else in your family got another form of autoimmune disease like MS or diabetes?
Anyway, don’t worry about it you are in good company and we are all here to support and help in any way we can. 🤗😘 Take care. 💕Spotty
Hi thank you for sharing and no one has it - my grandparenrs have diabetes though?? But that doesnt link right? Thank you yeah I just find i weird and at this age kina scares me x
Both Lupus and Diabetes are auto-immune disorders. So it is possible the predisposition for an autoimmune disease came from your grandparents and something has triggered it. What age are you Cherry? Have you had a virus in recent times? Somebody I met recently while promoting Lupus awareness told me her daughter got it following glandular fever. As Brook says, it hasn’t been figured out 100% yet, but these are the theories. 🤗💕
I am 18 years old - a virus i dont think so?
I suffer hair loss, I think there are many causes to many forms. I don’t know what’s causing mine but as I’ve heard from support on here many reasons and different things to try. Mine has happened over many years just worse at certain times and my son started lising his at 18 and got absolutely terribly upset, and tried all sorts of shampoos etc. He was getting so stressed at the lising it and the stress of losing it I said Hun you’ve got to calm down about it, stress will make it worse. Then once he destressed it started growing back, so don’t know if it was stress all along he was not conscious of or something else but luckily he’s back to a full head of luscious dark thick hair.
I don’t know what causes mine, stress might not help but I’ve not always been stressed when it happens so who knows but I guess there’s a few things we can try or if not ask gp. Good luck 👍🙏
If you have not had your blood tested for low iron stores, different from anaemia or low folic acid might be worth asking for blood test good luck
Hi Cherry14 ,
Hair loss is quite commonly experienced by people with lupus, but not everyone will have it. In most cases it is caused by the lupus itself, but sometimes it can be a side effect of certain medications. You can read more about it and get tips on managing this symptom in our article at lupusuk.org.uk/coping-with-...
I’ve tried all sorts of things over the years and only one really helped me with hair loss. My hairdresser recommended it. NIOXIN. There are different versions for different types of hair. I use series 4 (for coloured hair).
Hi Cherry. Ive experienced hair loss for a long while even prior to diagnosis. Started in my late teens. I’d lose clumps in the shower daily. I’ve destroyed many drains. I rarely get my hair cut because I lose it and it grows out. I call it autolayering. I can’t get my hair to grow past my shoulder blades because of this.
Both my aunt and father also have similar hair loss but won’t go to the doctors to discuss. I suspect they also have some variant of lupus. My father actually has real alopecia areata. The one thing I found did help was taking vit D and B12 complex supplements. Shampooing every other day and not overworking my hair. I never dye my hair. And reducing stress also helps.
Hope this helps!
Thank you yeah im no sure whether im losing hair coz of lupas or coz we lose hsor anyway everyday
It’s always a guessing game. Best answer I have is if you start losing more hair than usual, it may be due to lupus. I also found that my hair starts curling/spiraling during flares.
Okay thanks x
Just after my diagnosis I had a fair amount of hair loss but it improved as I continued with my medication. I was about 15 at the time. It should ease out over time. Your hair will be uneven for a bit but the loss should definitely lessen. Sadly I didn’t really find a remedy, but after a while it stops.
Xx
Ah okay thank you x you were 15? Is that when you were diagnosed? How old r u now if u dont mind me asking
I was diagnosed just before I turned 15 in 2017 - but yes the hair loss was around the same time I was diagnosed. I’ve just turned 17 🙂
Hi Cherry,
I have naturally quite fine hair anyway but I found that long term pred and the autoimmune disease just made it even worse... I thought I just had a thinning problem until I went to the hairdresser who pointed out that actually a lot of my hair had fallen out and grown back (apparently they can tell it’s “new hair”) but it was still very thin. She recommended that I try Nioxin and made sure I wrote down the name correctly 🙈 I asked my rheumatologist at my next appointment who told me to keep taking iron supplements. I never got around to trying Nioxin but I have heard good things about it (it can be a bit expensive though).
Someone on the vasculitis forum recommended Elvive Fibrology Thickening Shampoo & Conditioner as something to try first and I was very skeptical, but gave it a shot a few weeks ago. I have to say, I really wasn’t expecting much but I can see and feel a difference in thickness and you can no longer see through my hair when it is down.
I don’t know your situation but it might be worth trying first. Do keep an eye on it though, and mention it to your rheumatologist, as it can be related to your iron levels or the treatment that you are on.
Hope this helps
Hiya thank you for your advice and tips yh not sure if its hairloss or just everday kina daily thing that happens to all or... just confused x
You’re welcome. Some hair shedding / being on your hairbrush or pillow is normal for healthy people, it’s just hard to work out when it goes past that sometimes before it becomes super obvious. If you’re worried, have a word with your GP or rheumatologist x
Im really sorry to hear thst but thsnk you for sharing with me xx
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