Hair loss ? :-(

Hair loss ? :-(

Hey everyone.

I've posted a couple of times this past month about how I've been suffering with mad itching. It's calmed down on my body but is getting worse on my scalp/neck/ears. I can't see any rash. But last night I was waking every half hour or so and staying awake itching my scalp like crazy. I'm worried that this is the start of hair loss. I've taken a pic of the back of my head and it does look like its thinning (sorry about the skin flakes everywhere, I've been itching a lot!) just wondered if anyone else who has experienced hair loss has started out with itching and thinning? I don't have an appointment with rehumy till October. I hope it calms down Becuase I can't handle two months of this itching!!

Hope everyone is well X

15 Replies

oldestnewest
  • Hi Stacie, I have SLE and Fibro, I've had hair loss and itchy red scalp problem for a couple of years, sadly this was exacerbated by medications.

    Do you have any other skin problems?

    I suggest you see your GP to explore if any of your meds side effects can be causing your hair loss, also ask to refer you to a Dermatologist. I had a complete medication change and was prescribed scalp treatments and steroid cream, so much better now and the hair loss had significantly reduced.

    Good luck xx

  • Thank you for the reply. I have an app with rehumy in October, I'll see gp before then if it gets any worse. I'm currently not on any meds Becuase they first thought my lupus was inactive but the past few months I've suffered with lots of symptoms to suggest it's become active :-( thanks for the advice X

  • Hi stacie. I found that ginger dandruff shampoo from Bodyshop works a treat for me and stopped the mad itching i had.

  • Funnily enough, i used to use this a while ago before I was even diagnosed. I don't even know why why I stopped buying it. I'll deffinetly try this, thanks X

  • THANK YOU UNITY3 I SHALL CERTAINLY TRY THAT SHAMPOO

  • Can't add 're the itching but has Gp made sure your iron levels are optimum as I found out the hard way that the slightest drop in my iron levels meant a large amount of hair dropping from my head.Every flare seems to eat away at my iron levels so am now prescribed iron tablets 3 x daily.It did take a lot of trial and error to find one that didn't make me sick but got there in the end and thankfully has reduced the hair thinning dramatically.

    Hope things get sorted for you soon

  • Hi, I have also had this mad itching frenzy. Fortunately on one of the days where I had been itching like a loon & then the 'burn' which is inevitable when you can't help rubbing your skin (Sounds a bit odd but better than scratching) I was due to see my 'regular rheumy' (not at the Lupus centre) & he said that it was a flare due to my having gotten slack with applying suncream daily & that although my Lupus was originally more joint-related & on more serious flares organ involvement, it seemed to be affecting the skin more these days (even strip lighting at work). I am already on Azathioprine because the previous years of Pred taking had caused the usual weight gain & osteopenia, but said that a months course of Pred should help get through this latest itchfest. It did! But the downside of having no immune system has made me susceptible to pick up any bug or germ going & I have got myself an extremely painful sinus infection & tooth abscess...which in turn is threatening yet another flare. So the moral of this rather long story? Prednisilone is like those pre-lupus partying days...Helps pep you up & brings out a smile at the time but there is always a price to pay.

    Try corticosteroid cream & piriton, it won't fix the hairloss but you might feel more comfortable.

    Goodluck 👍🏼

  • I HAVE TRIED PIRITON AND TAKE IT AT NIGHT SO THAT I AM NOT SCRATCHING LIKE A MAD THING AND IT DOES HELP

  • I've had that terrible infinite itch, then burn, then itch and burn and oodles and oodles of hair loss for over 3 years now. It has only gone into remission once for maybe (being generous here) a week.

    Don't think about. It is hard to do, but the more you focus on it, the more it will itch.

    For me, when I start to excessively itch, I know I am stressed about, either my surroundings or my thoughts.

    Wish I could post pics in the reply to show you what my hair loss is like. I don't wish it upon anybody!

  • YOU ARE QUITE RIGHT THE ITCHING IS WORSE IF YOU ARE STRESSED AND YES I TRY HARD NOT TO FOCUS ON IT AND THAT IS GOOD ADVICE TO ANYONE

  • I haven' lost any hair, so far, from lupus, but have an itchy scalp. I've lost hair before due to extreme stress. It came back. Borage applied to the scalp is good as is biotin supplements. In the states there is a line of products from a company called Regenix. I don't know if they have locations abroad but helped a lot with the stress hair loss. Good luck. I hope this helps as our hair is so important to our sense of self

  • I have had this for a year or more - finally diagnosed with Discoid Lupus and Sjogrens - DONT scratch - where I did originally is now small bald patch, due to "scarring" . I am now on Hydroxycloroquine which (after a month) has stopped the itching but not hair loss. To ease the itching I was recommended cold pressed sesame oil, rubbed into the scalp - great if you are in the house. I put an ice cube in a sandwich bag and held that on the worse part - it worked as it stopped me scratching. Am going to get steroid injections into the bald bits as soon as I can - before it scars. Hope this helps. Good luck - Cas

  • THE ITCHING IS LIKE ANTS CRAWLING UNDER THE SCALP AND IT DRIVES ME MAD. MY HAIR DOES NOT THIN BUT I HAVE BALD PATCHES WHERE IT ITCHES. I WAS PRESCRIBED A STEROID GEL TO PUT ON MY SCALP WHERE IT ITCHES BUT THAT STOPPED WORKING AFTER A WHILE. A MEMBER OF HEALTH UNLOCKED SUGGESTED NIZORAL SHAMPOO AND THAT DOES SEEM TO HELP. GOOD LUCK. THE ITCHING IS REALLY HORRIBLE AND HARD TO EXPLAIN TO ANYONE WHO HAS NEVER EXPERIENCED IT.

  • Hi stacie, you must be feeling frustrated, usually I've been told in the past

    It's the changes in your blood that causes itching. I have lupus and psoriasis and do itch a lot, I use alovera shampoo which helps. You can always get melds prescribed for itching. X

  • Hi stacieann1989,

    We wrote a blog article which has lots of information and advice for hair loss in lupus, you may find it helpful. You can read it at lupusuk.org.uk/coping-with-...

You may also like...