Hair changes in

Has anyone else noticed a big change with the texture if their hair? Mine seemed to change instantly. Going from being very healthy and in good condition to extremely dry, brittle and breaking easily. Any ideas or tips welcome. Thinking it's a symptom too.

[weathervane]

Hi Sophie , my hair has changed alot sice i was diagnosed with Sjögrens and started on rituximab. My hair is thinner, and the texture is coarser and dry . I have found that using a good conditioner on the ends helps every time i wash it and hair oil has helped as well . I used to have shiny hair and never any split ends , it gets me down but at least the treatment is helping pain . I hope you find something that helps, best wishes 😀

[Hidden in reply to weathervane]

Hi thanks for the reply. The ends are fine it's mainly my scalp and roots that's the problem. No amount of conditioner helps with that 😔

[weathervane in reply to Hidden]

Do you have a painful scalp?

[Hidden in reply to weathervane]

It's not painful. Just gets very itchy.

[weathervane in reply to Hidden]

I have had problems on an off with painful sometimes itchy scalp , I found that black seed oil was the only thing that helped , I rubbed it on my scalp at night . Best wishes

[Hidden in reply to weathervane]

I had hoped that all my symptoms were thyroid related....hot/cold intolerance. That can also cause dry brittle hair. Apart from very high thyroid peroxadise antibodies my thyroid is fine....so far.

[weathervane in reply to Hidden]

My hair definitely changed when I became hypothyroid, thats 15 years ago, down hill from there LOL

[Hidden in reply to weathervane]

Did it not improve when you were on thyroid medication? There is a connection between lupus and autoimmune thyroid disease i read.

[weathervane in reply to Hidden]

It never really got back to normal, but i think i had other autoimmune disease problems that were only diagnosed two years ago and the treatment im on also damages the hair ☹️

[Hidden in reply to weathervane]

Oh no 😔 Everything has side effects i guess

[weathervane in reply to Hidden]

I had no life before I started treatment as I felt so ill and was in constant pain so it’s worth it really.

[Hidden in reply to weathervane]

Sorry to hear you were so unwell. My life isn't great either at the moment. Between pain and flare ups of flu like symptoms and feeling so unwell. Along with the heat episodes. Waiting on referrals for specialists takes so long .

[weathervane in reply to Hidden]

Its sounds like a flare, keep a note of all your symptoms, maybe your gp could make your referral more urgent? Look after yourself and rest when you can 🌸💐🌼

[Hidden in reply to weathervane]

The GP has tried but no appointments until may. I have an urgent referral to a dermatologist for my skin do hopefully thats quicker

[weathervane in reply to Hidden]

My son has lupus and his care is jointly with rheumatology and dermatology, dermatology started his treatment whichis plaquenil and methotrexate.

[Hidden in reply to weathervane]

Can a dermotologist also diagnose lupus? As the rheumatologist I saw previously was not very good. He dismissed lupus straight away. It was an endocrinologist I saw about my extreme heat/cold intolerance who suspected lupus.

[weathervane in reply to Hidden]

My sons lupus mainly affects his skin and causes tissue loss , the dermatologist carried out biopsies which enabled him to make a diagnosis of lupus profundus which is a more unusual form of lupus, both the rheumatologist and dermatologist have been very supportive.

[Hidden in reply to weathervane]

Thanks for the reply. My sun allergy and raynaud's started around the same time. Just wondering if they could be lupus related?

[MOOG144 in reply to Hidden]

Hi Sophie

I found that my hair lost its shine and softness when I started with my underactive thyroid but now I have been diagnoised with Lupus and started Rituximab, steroids & imnunosuppresants it is so dry, course and brittle that no amount of conditioner helps....

I am sure it is all connected but not sure of anything effective at helping it so sorry can't help but certainly feel your pain xxx

[Hidden in reply to MOOG144]

Hi thanks for the reply. It's not the biggest problem but it's effecting my confidence and self esteem. I was hoping when I see the dermatologist about my skin they might be able to help with that too. It is frustrating as nothing helps 😔

[Krazykat26]

Hi Sophie

I have SCLE at the moment diagnosed by dermatologist.. unfortunately even emergency appt for dermatology includes a long wait..but it will be worth it when u eventually get there.

I'm at an age where my hair has changed alot anyway..going grey..but I did find my hair became thin and brittle so about two years ago I had it cut off and I haven't looked back. It's so much easier to manage for me.

I have read lots about coconut oil helping with hair n skin..I have used it on my skin which constantly has rashes to good effect but haven't tried it on my hair as yet. It's cheap n easy to get hold of but if u decide to give it a go use extra virgin organic coconut oil. Asian ladies tend to put almond oil on their hair to make it smooth n shiny and I have tried that in the past n it does the trick. It's a bit more greasy than coconut oil n don't use it if u have any nut allergy!! And if u do use either of these wrap your hair in some cling film and a towel before u go to bed if you're leaving it on overnight because it can leave a bit of a mess on your pillow.

Good luck xx

[Hidden in reply to Krazykat26]

Hi thanks for the reply. I have tried coconut oil befure but no success. It just made my hair extremely greasy. It's mainly the scalp and roots that are incredibly dry and breaking. I have read that lupus can case your hair to feel brittle and break easily.

[weathervane]

This may be of help

lupusuk.org.uk/wp-content/u...

[Hidden in reply to weathervane]

Thank you. I have read that before. It could be totally unrelated but it's seems a coincidence it changed so suddenly. Then developed other symptoms too.

[DJK99]

Hey sophie - yes I have this too and started to use a freebie Id got from Aveda - its one of their beautifying oils - can use it on skin, hair, nails, anything. Its not cheap but I found it makes a difference if I massage a load on my scalp and dry frizzy areas at the front, and then to a lesser degree allover and then got to bed with a shower cap on my hair. Not using a hair dryer to dry your hair everytime helps too but then it looks frizzy.. so I keep it for special occasions... like actually going out! I think sleeping with any oil on your hair and using a mild shampoo after is the best option. I wish you luck with any of that Sophie - I know how depressing it is - Ive certainly had some improvement. All the best, D

[Hidden]

Hi thank you for the information. I will look into that. I have tried coconut oil befure but that didn't really help. Just made my hair look very greasy. You're right it is very depressing. Especially when there's nothing you can do about it. Besides shaving it all off 😣

[Krazykat26]

Hi Sophie I had another thought last night about the oil treatment for hair..the trick is how u wash it off so that u can get it all out. After u have oiled your hair, when your ready to wash it off don't wet it..get a small cup of water and add a good dollop of shampoo n mix it in well..then massage this mixture over your scalp and hair..this helps to emulsify the oil in order to remove it. When you're happy then wash as normal with mild shampoo..try leaving off the conditioner because shampoos n conditioners have all sorts of chemicals in them. Don't use any heat just let your hair dry naturally. Holland and Barrett do a nice aloe Vera shampoo from an Australian company that is lovely to use. X

[Hidden in reply to Krazykat26]

Hi thanks fid the tips. I am a but worried using anymore oils in my hair as I have used coconut oil before and it didn't agree with my hair. Took forever to get it out and it was so greasy after. If I don't use conditioner on my hair after washing it's awful. I use pantene 3 minute miracle which does help slightly. Any recommendations for other good conditioners except for using oils?

[Krazykat26 in reply to Hidden]

Sorry I don't know about conditioners but I do think that the aloe Vera shampoo that I mentioned before do a range of conditioners as well..might be worth a try..I can't remember the name of my shampoo at the moment.

Another thought is maybe discussing this problem with a hairdresser..they might be able to give u some tips x

[Hidden in reply to Krazykat26]

I am seeing a hairdresser soon so will ask her. I have had a keratin complex treatment before but it didn't last very long. And is very expensive. £200 and lasted maybe a month, supppsed to be 4 or 5.

[Hidden]

Hi Sophie

I use Alphosyl shampoo which soothes the itchy scalp and I take biotin which helped my hair. My hair has always been very fine and brittle but had got worse as I got older. Best wishes

[Hidden in reply to Hidden]

Hi thanks for the reply. I have an urgent referral to a dermatologist for skin issues/possibly lupus. So hoping they might offer advice or treatment also.

[Hidden]

I am so sorry. That is just awful for you 😔 Is that connected to your lupus or a seperate autoimmune disease? And do any of the medication help?

[happytulip]

My hair went from being really long and thick but with a silk like texture to being a total mess.

50% of it fell out prior to diagnosis. This happened within about 4 months. Then I started pred and it became brittle, then DMARDS and it came out in handfuls.

I now have very shiny, healthy looking hair which is growing back thickly and it looks strong. I still get hair loss during a flare but my hair is so much stronger now.

I think I must have tried every product on the market and my hairdresser who had lupus herself was very understanding.

The thing that worked for both my hair and skin is bone broth. I drink it everyday and since I have so many people have commented on my hair.

Its fabulous stuff in my opinion.

[Hidden]

Hi i'be never heard of bone broth or where you can get it. Sorry to hear you had so much trouble but glad you're better now

[Hidden]

Hi how awful to be going thigh all that. Has a dermatologist not been able to help you with your hair? Can I ask how long it took to be diagnosed with lupus and hypothyroidism? I have symptoms of both hyper and hypothyroidism but no changes in the bloods yet.

[Hidden]

Hi I am constantly fluctuating between either extremely cold or extremely hot. I don't know if that's the hashimotos and you can switch between the 2 before becoming hypothyroid?