Hair loss : I have really bad hair loss , scarring... - LUPUS UK

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Hair loss

Harrisgran1 profile image
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I have really bad hair loss , scarring on my head and dermatologist has advised to see plastic surgeon which I did who has agreed to pull my scalp together and stitch it to cover scarring , seems drastic but in a strange way I'm scared but can't wait to get rid of these severe bald patches I've had for 12 years has anyone else had this sort of treatment ?

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Harrisgran1
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5 Replies

Hi - I haven't had this sort of treatment but I would if I thought I needed to so I think it sounds as if you are doing a good thing for yourself and really hope it makes a big difference to the way you feel about yourself.

I don't have a diagnosis of Lupus, I have RA with Hypothyroidism and Sjogren's. But I lost my hair for a few years as a child - from age 9-11. Fortunately for me it grew back but I used to hate going into school with bald patches and hats. I also suffered from severe eczema all through my childhood and adulthood and after giving birth to my third son all my hair fell out once again - this time hormones were blamed but I also had very bad eczema flares and severe rhinitis at the time. If it hadn't grown back in again I would have done a lot to make myself feel less conspicuous and was very wary about some of the drugs I've taken for RA in case they led to further hairloss as is sometimes indicated.

So I think it's great that the plastic surgeon thinks they can help you - wishing you the best of luck.

Harrisgran1 profile image
Harrisgran1 in reply to

Thank you sooo much twitchytoes , I am scared although for once I can define my hair as it's short and not sit on a bus with my hand over my head and can look at my hair when wet in a mirror without seeing bald after 22 years will be amazing to me thank you for your comment x

madmagz profile image
madmagz

Hi Haarisgran

I have had lupus for nearly twenty years and hair loss and scalp problems are two things that I have big problems with as I am sorry to say is healing after any sort of surgical procedure of which I have had many as I have other health issues going on too. I generally get ulcers along suture lines due to low immunity and this causes more scarring. I have scarring and have been bald several times over the years but the times that my hair has regrown it has grown back beautifully thick for a few years. OK it does not always last long but it is nice while it lasts. I have now been bald this last time for nearly four years and personally would not risk surgery of any type to my scalp as there is not much spare skin if an infection does occur for swelling so it would be very painful. I am noticing a few tufts of regrowth again and each time my hair comes back it is different so it is a guessing game for me and my family, I also have an extensive range of bandanas and scarfs, I personally would say leave well alone the bald patches are livable but scalp infections are exceedingly painful I have had one in the past, I am not saying you will get one but you have not said if you have got lupus but if you do and have a suppressed immunity it is a very real possibility so why risk putting yourself through it? Obviously this may not be what you want to be told but having had twenty years of scalp problems I am thinking of you.

Good luck with whatever you decide to do, if you do go ahead with it I hope it works for you and you get the results you are hoping for,

Madmagz x

Harrisgran1 profile image
Harrisgran1 in reply tomadmagz

Ty for your comment madmagz x I have suffered hair loss on and off for 21 years I'm now 44 but there is so much scarring no hair will ever grow back , I've seen dermatologist who can't help but did say she would refer me to nhs plastic surgeon but didn't know whether or not he could or would help , I have short hair and I have lupus but I'm willing to take the chance of an infection as I'm so down with massive bald circles in my head it's my personal feelings I suppose but actually can't wait although scared to get this done thank you for replying and I agree it's a bit drastic but to me it's something I have had and was so embarrassed about for years x

madmagz profile image
madmagz in reply toHarrisgran1

All the very best to you, I am glad that you are going to be able to see an NHS plastic surgeon hopefully if they can help you and you won't have any ill affects, I suppose I am lucky in the sense that as a biker I used to wear bandanas over my hair when I wore my crash helmet so already had plenty so just wear them on their own but am surrounded by men who shave their heads so fit in quite well and just make jokes about it........ if you can't beat them join them type thing! My hair used to get so tangled on the bike especially after a long journey little things like not putting up with that has helped me accept being bald as I love being a biker so much and we do lots of fund raising.

I know what you mean about feeling embarrassed though as the first time my hair fell out I was devastated it is all the bikers that have helped me accept it.

I sincerely hope that whatever you decide to do things go well for you and you make a good recovery if you do have the treatment.

Take care and I look forward to seeing positive posts if you do have the treatment done as you may well give hope to others in the same situation

Good luck

Madmagz x

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