Hair color?: Has anyone here given up... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hair color?

jean48 profile image
24 Replies

Has anyone here given up hair color? I'm 49 and the doctors want me to stop coloring my hair. It's a tough, painful process to get it to my natural color. I will be white at the age of 49.

Jean

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jean48 profile image
jean48
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24 Replies
BridgetGoldie profile image
BridgetGoldie

I will NEVER do this! :(

jean48 profile image
jean48 in reply toBridgetGoldie

I know what you mean. I admire those women that can confidently carry off their natural hair color. I have a short graded bob. I'm going natural but my stylist is adding a white blond to make it look more striking. So I'm hoping people will look at me and wonder if I'm white or blond. Wish me luck.

Jean

Did they say why? I have been thinking about it but only because my hair is so dry and brittle all the time.

jean48 profile image
jean48

My doctor does not like the chemicals. My hair will look healthier and my skin issues will likely be less. I have dematitus around my scalp.

Jean

emmaj profile image
emmaj

Hi I know herbatint is a natural hair colourant - never used it myself but its made with all natural ingredients maybe worth a try - also could you maybe try toners instead of colourant x

CanaryDiamond10 profile image
CanaryDiamond10

I had a brain biopsy for one of my diagnoses and therefore have an actual hole in my skull comparable to a baby's fontenel. That day I stopped doing anything to my hair. I also think my natural graying is actually attractive. God's doing a fine job and He's cheap! I wear a 72-hour Fentanyl (duralgesic) patch for chronic pain. Over three days the medicine is absorbed through the patch on the upper outer arm. Common sense tells me if the medicine can be absorbed so can a chemically based long term dye or straightener. Even a natural henna is questionable. In the States, West coast doctors actually believe in detoxing one's body at least two weeks of the year. Yes, they recommend offending one's friends and whatever it takes to detox one's body of all chemicals; soap, make-up, deoderant, toothpaste, perfumes, shampoos, nail polish etc, etc. The East coast physicians have not embraced this "au natural lifestyle" with the same enthusiasm. However, when specifically asked they will admit detoxing only makes sence as we Americans are very prone to overuse these products. There has been little or no testing regarding the question of if these products are absorbed in even the tiniest amounts ... over say 10 years... could amount to be greater than expected. Symptoms of absorption could be confused with menapause or disease symptoms. Although I would probably look much better with a little help from the beautician, I could not bear the constant wondering what it was doing to me. Since I am not particularly disatisfied with my hair, my plans are to leave well enough alone!

anniesensi profile image
anniesensi in reply toCanaryDiamond10

Hi there,

It's a little off topic, but I am showing signs of APS and have had bloods taken to test for it. I have had there hospital admissions this year alone with clots in arteries, veins, and most recently, through both lungs. Apparently I was lucky to get to the hospital when I did. So, yes, I'm worried! I also have MS.

I wanted to ask you about your diagnostic tests. You mentioned a brain biopsy. Is this normal for testing for APS? If it is, it's ok - tell me, because if I know I can prepare and cope.

Thank you.

CanaryDiamond10 profile image
CanaryDiamond10 in reply toanniesensi

If you were referring to MY brain biopsy - it was to confirm Central Nervus System (CNS) Vasculitis 10 years ago. They were looking for vein to find proof of spasming, shrinking and dyeing, but did not find any and so closed with no findings rather than risk damage. It was a dangerous test that ended up fruitless. I would not make the decision lightly. Find out how much information it will net and of what benefit that information could be to your case first. We were able to prove it through other means. And so they were able to proceed with treatment for that diagnosis. It is NOT a common test for APS. It is a last resort test for practically everything. I test positive for cardioantiphosphalipid antibody and have had an array of autoimmune disorders. I coped with the brain biopsy because they wouldn't treat what they couldn't be positive of. Finally, I really can't remember what the criteria was, but they proved CNS at age 49. I am now 60 and they have just put the picture together from childhood history to test for APS. I finally got a rheumatologist who actually listened to me. Oddly enough the diseases have much in common. Mainly, one doctor who seems to have the golden crown in the disease and whom everyone wants to consult with. Here he is at Cincinatti. and for APS/Hughes I have not heard of a single doctor to take the helm on the disease. In England there is the professor Hughes who gathered and documented the similar symptoms to meet the criteria to actually give the disorder a name (his). This publication refers to him a lot when people ask about diagnosis in England. Four words... St. Thomas and Prof Hughes.

You certainly have your hands full but try to be brave and write down your symptoms in a daily diary. That way you sort of have a record when new medications are introduced and how you actually feel at different doses. It's easy to lose perspective over time. Pain is pain and to separate different pains and grade them is difficult if not impossible. but it does aide in disagnoses. I am also the type of person who would rather just have the truth completely, simply and accurately so that I feel I can grasp some control of the situation and make an intelligent decision about serious tests such as brain biopsies. I send you prayers, smiles and a lot of luck, anniesensi! Good thoughts on your journey.

anniesensi profile image
anniesensi in reply toCanaryDiamond10

Thank you so very much for your thoughtful and detailed post.

I am planning to take the advice and go and see prof.Hughes. I live only an hour away from St Thomas' hospital, and so I will definitely be making an appointment.

Thank you, thank you xxx

jean48 profile image
jean48

Maybe I'll try that.

Jean

jean48 profile image
jean48

Very interesting - thanks for sharing;

Jean

MaryF profile image
MaryFAdministrator

I have read some quite hard hitting articles on hair dye, the darker the dye the worse they are apparently, also just because you show no allergy does not mean that you won't in the future. I have noticed that the last few times I have done mine, I have felt ill for days afterwards, not an allergy but definitely unwell. I have just switched to a new range stocked from Holland & Barrett, I shall report back after I have done the dreadful deed!

Mary F

jean48 profile image
jean48 in reply toMaryF

It is indeed a dreadful deed.

Jean

77tiger05 profile image
77tiger05

I color my hair (bright blonde) about every 3 months. Haven't had a problem yet, but then I've been doing this my whole life. I'm now 59 and probably will never stop coloring it. My normal color is blonde but have many many strands of silver in it. Maybe it would look ok, but I am just not ready yet!! I still feel like I am in my 30's!!! Yah!!!!

jean48 profile image
jean48 in reply to77tiger05

Yah 50's are the new 30's. I'll be 50 in Nivember.

Jean

olleberj profile image
olleberj

I'm forty-eight and my hair is definitely getting gray. I have light brown hair with gray and white streaks at this point. I really can't dye it since I swim regularly and the chlorine and salt from the pools does enough damage already. If I were to dye it, I'd probably lose my hair altogether. I also don't like the idea of having to re-color my hair every few weeks. It seems expensive and inconvenient. I'm just going to keep what God gave me and try not to pretent I'm not growing old...we'll see how I do! :)

jean48 profile image
jean48 in reply toolleberj

I admire you and am hoping I will be able to stop dyeing my hair. I'm 49.

Jean

BrownChocolate profile image
BrownChocolate

Hi Jean,

I completely understand where you are coming from.

I use to relax and dye my hair ( afro carribean) almost every colour of the rainbow until it started to break and fall out ten years ago. I was then diagnosed with APS and SLE. I found out that all the chemicals used even natural (i now don't believe there is such a thing as natural) affected me and that's because I feel that the medication that I am taking which is a lot 27 a day including clexene has interacted. I now have thick healthy grey hair of which I only wash and blow dry and every one comments on how beautiful it looks. I am now 47 and don't regret going natural.

I know our hair is our crowning glory but my advise to you is let it take its course and enjoy the various stages that it takes.

p.s If I do want a change I wear a wig they also come in almost every colour of the rainbow.

jean48 profile image
jean48 in reply toBrownChocolate

Love your comments. I will have white hair if I can get down to the natural. Wish me luck.

Jean

Hilda_G profile image
Hilda_G

I cannot afford to get my hair coloured professionally, and far too chicken to try to do it myself so I'm just letting it get whiter and whiter. It actually looks quite classy at the moment! I call the white bits my "highlights". What saddens me is that I have a friend the same age (46) who has not one single white hair. I blame my parents...!

Emma

jean48 profile image
jean48

Gosh I know we could all save a lot of money by not coloring. Well I guess I'll blame my parents too.

Jean

TreyBon64 profile image
TreyBon64

Jean ... I am 48, have been grey since 2 weeks after my mum's passing when I was 16yrs old. I coloured my hair since then and gave up about 2 years ago. My hair now is pure white. It was a thing to adjust to but I'll be coming up for my 49th birthday soon and I won't be colouring my hair again any time soon. I am however saving up to have a really good cut on it to show off my white hair. Many people have complimented on it ... so give it a go ... you may be surprised xxxx Trey xxxx

TreyBon64 profile image
TreyBon64

Don't blame your parents for the white hair ... blame the APS ... I do xx

jean48 profile image
jean48

How would APS effect hair color?

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