Hi I still haven’t seen a rheumatologist so don’t know is I have Lupus or anything else. My Gp thinks it’s something autoimmune and I’ve had so many blood tests. Most of my lovely thick hair has thinned away over the past couple of months and I’m left with a Danny Devito / Bill Bailey style hair. I’ve tried to not let it bother me but today in particular I felt a lot of people staring at me. I have to tie it back for work ( I’m only managing a fe hours due to feeling so I’ll for so long but then when I take it down more hair just comes out. I don’t know if it would be better to cut it off but I can’t wear makeup due to my skin and eyes being so sore to make me feel better and I haven’t got the face which suits short hair. I know it sounds very vane but I feel so upset by my hair loss. I don’t really expect anyone to have any answers - I just needed to let out what’s on my mind. Thank you
hair loss: Hi I still haven’t seen a rheumatologist... - LUPUS UK
hair loss
It’s not vain - and it’s because you are ill -hopefully when your illness is diagnosed and treated your hair will improve-but sorry to say it won’t happen overnight…it takes time.
It a subject often discussed on another forum (PMRGCAuk) , so maybe have a look at this link - you should be able to read no problem -and also look the related posts -
Hi, I too have suffered hair loss, approximately 60%. I have had to make that hard decision that its better to have it short and healthy (ish) looking than long and straggly. I really do understand the feelings you are having because our bodies are fighting against us and there is not a lot we can do about it. Hopefully when you get a diagnosis, you will be given the weapons (medication) to fight back xx
Not vain - hair is an important part of our identity (talk to any man who is in the early stages of hair loss and I guarantee they mind about it). It's really hard and I sympathise. I also really hope you don't have lupus.
I've just had mine cut REALLY short. I'd given up on it, not just because it has got so thin and wispy, but because I always have to wear a hat outside to keep the daylight off the top of my head - so having nice hair seemed a bit pointless because it was always flattened and hidden.
On a recent trip away in my van I was away from a shower for several days - and figured that short hair would make wild camping so much easier. And because of my hat - no one would see it anyway. So off it has come....
I have had short hair cuts in the past (many years pre lupus) and not liked them much. But this looks and feels so much better - all my wrinkles are on display and I don't care. The dangerous thing is that it looks so much better I don't want to wear my hat! (and that's a battle I'm going to have to have day for a while, I suspect).
Good luck with your diagnosis.
I had hair loss in patches and in general at the front of my scalp, coupled with a host of other Lupus like symptoms- fatigue, depression, painful joints, butterfly rash, nerve issues on right hand side, fatigue.
Was ANA positive, but on testing later had turned negative.
I had almost 3 months off work. Feeling much better now and notice my hair starting to grow back. I’m back at work with few issues now other than residual pain and nerve issues, but nothing like before.
NHS was just a waste of time, couldn’t get to see anyone in good time so paid for a rheumatologist privately.
Anyway, hoping you don’t have lupus and wishing you good luck in your search for answers! Just wanted to share a ray of hope..
How about finding a really good wig shop and giving it a try. There are many good wig shops now because of the increase of chemo for things. They have real hair wigs too so not just nylon. There are many in London and a good one in Bristol nearer me. I've looked into it because of my hair thinning. I have many black friends and they don't think twice about wig wearing. It changed my view on wigs. You could find a good wig shop and try how they feel and look. One of my friends has about 10 wigs only cheap ones from markets which she dyes her preferred colour and they look great. It's just about feeling good and like a woman again. I still get my eyelashes and eyebrows tinted and lifted just to give me a bit of a boost when you're feeling rough inside. Also it helps with sjogrens as my eyes water all the time so mascara doesn't last. Try anything if it makes you feel better and gives you a boost. Lots of us understand how you feel. Xxx
That is such a good idea…you can find lots of wigs of all sorts on Amazon.
Now this is showing my age here …….but back in the 1970s, everybody young and old wore wigs, even if they didn’t need to. We treated them as a fashion accessory & most brunettes bought blonde wigs, & vice versa. I remember appearing for work one morning….when one of my crew asked where I was…I looked so different in my long blonde wig, instead of my own thinning dark locks. …he thought I had overslept & missed my call!
I am almost at wig stage. I think a great idea if you're going out etc... also sometimes hair can come back a bit but I'm not holding my breathe. It's so sad when you're hairs been thick and now it's getting to comb over stage. I really hear you!
Honestly I loved wearing my wigs…but only because my real hair is rubbish.
In fact they had a programme on QVC the other day,& the wigs they showed made me think I might get one for those wet & windy days that ruin whatever style my hair ever has!
Tbh, most people I know whose hair thinned on RA drugs did recover..so hang on in there
Go for it, try one it can't hurt if you don't spend too much. If you find a good site for them let me know.
The thing is on QVC. You can try them for 60 days, then send them back if you don’t like them and get all your money back!!
That should get me halfway through the wet’n windy winter, shouldn’t it?? 😝
If Green is your colour…how about this for 31/10 On Amazon!
“Green Wig, Green Short Bob Wig and Sunglass Set, Neon Short Bob Wig Sunglass Pack Costume Colorful Cosplay Wig Hairpieces for Bachelorette Neon Party Favors, Party Wigs Halloween Decorations (Green)
Brand: ZNDFTW
Hello.Hair loss socks so much! And when mine grows back its like fine baby hairs.
Might be worth looking up Fenugreek for hair loss on YouTube. I have just started using it. You boil it up and use the cooled water as a spray treatment and then the blended seeds for a mask. Apparently there is science behind it.
I've only started using it this week so can't say it is works. However it has added volume to my hair, and made is very silky soft. So far, very impressed.
I had been using oils etc. They do help, but was getting fed up of the cost of it all and the oily hair.
Finger crossed 🤞 . I hope we all find something that works,
all the best Sarah.
Hi TheRedOnes, what about cutting your hair in a bob so it’s still got some length but you don’t need to tie it back for work? I’m only suggesting this as I know from my own experience and research that it doesn’t help with hair loss having it tied back. I stopped colouring my hair and using straighteners or any heated styling equipment and I only blitz my hair with a hair dryer if I absolutely have to. I decided I’d rather be grey and living with my natural curls than have no hair. I still lose a lot of hair but some of that is down to my age now too. Hope this helps? Take care
When I first got sick my hair fell out until all I had left was orange fuzz. Then it slowly came back and a hairdresser regularly cut it until it returned to normal. I used hats and scarves until then. It is terrible to lose your hair. I had friends who also lost hair for various reasons. They were very supportive. I wish you a speedy return to health.
I am so sorry you are experiencing the hair loss. My hair thins terribly and about 7 years ago I had a pixie cut. It was well received but I hated it if I am honest. I have spent time since then re growing and having to do the same thing (4 times now) I have now decided to stay pixie. It does suit and I don't have to keep going through the trauma of losing my hair again. I think someone else mentioned it’s better shorter and sometimes it’s a lot thicker so it looks healthy. You are not being vain I often say I’d take the pain and have hair and I know how mad that sounds but hair is a big thing to a lot of us. I wish you luck on your journey x
Hi, I always had thick hair but lost a lot of it early in my illness. It is upsetting, naturally.
I found my hair loss was less when I took naproxen, but I could only tolerate short courses as it aggrevated the mouth ulcers & gastric reflux.
Maybe speak to your GP & see if you can try this whilst you wait for a Specialist appointment.
Take care,
Sarah
Oh dear…how very distressing for you.
Why won’t your GP refer you to a consultant….surely all your symptoms merit a visit to a doctor who can start some investigations?
I do hope you can move on to a rheumy appointment very soon.
Thank you. I have been referred to a rheumatologist but the waiting list is excessively long ☹️
Well….have you called the hospital…. where you have your Rheumy appointment and asked if they have a cancellation list?
Some hospitals will put you on the list and call you at very short notice like call you in the morning to go in the afternoon.?
Might work!
just an update - I’ve got a wig and it makes me feel more confident 😊
Hair loss
Hair loss with hydroxychloroquine?
Hair loss!
I was prescribed this on Wednesday by dermatologist to treat hair loss. What treatments have worked for you? 
