Losing my hair...

[purple-lou]

I am losing hair. It has been a slow process and only myself and my partner have noticed. Is this because of lupus or my meds? I'm on placquenil. My hairline is receding. I'm already struggling with a flare and generally feeling really low. Lovely comment off a family member yesterday didn't help, "ohhhh, are you aching today?" I wish!! It's so frustrating and it hurts. My poor children hear these painful remarks. They are confused enough as it is, and remarks like that don't help. Sorry for the rant! Sometimes I wish I had the energy to scream! Xxx

[Hidden]

Hair! Such an important part of our self image.

Purple-Lou, I've no idea if you are losing your hair as a result of lupus or the drugs, and in a way it doesn't matter. I have the same problem (and I am guessing it is the drugs) except that it is happening quite quickly at the moment and is fairly scary.

I got very upset when I saw myself in a shop mirror (very bright harsh light showed up my bald spot and thin parting), but have since treated my hair with hot olive oil (wash with shampoo; apply a little olive oil warmed in a cup of boiling water; wrap in co-op carrier bag and make a towel turban; leave for half an hour or so - then wash again, twice), and I have also cut it to give it a bit more bounce (you probably go to the hairdressers - which would be better that the home made hack job I do on myself).

Doesn't look QUITE AS BAD now - but I . bought a new hat anyway, and maybe this would help you too???

As for your sarcastic family - maybe you could offer to swap bodies with the next one? However much they scoff at your lupus, I'll bet they wouldn't like to have it!

Take care, Purple-lou

[purple-lou in reply to Hidden]

It's good to know that we aren't alone in this battle. Xx thanks

[megs_tom]

Aww bigs hugs to you both I am also having hairloss but it is not caused through medication. Luckily my other hair hides the new patch, for now! It is quite ironic that we have all these symptoms that no-one can see and we suffer so badly with them. Then you get a symptom that can be seen and it ruins your self-confidence and makes you feel just as low as the invisible symptoms!!

Please try and ignore the ignorant people who don't have anything nice to say. You know your pain is real. We are all always here if you need to talk or rant. Take care xxx

[purple-lou in reply to megs_tom]

I think it affects us so badly because our esteem is so low anyway. We aren't alone though. Xx big hugs

[megs_tom in reply to purple-lou]

Yes it does not help when you already feel at your lowest! But this forum is certainly a great support system for us xxx

[LULU85]

hi hun

Im glad you asked this as I have just started on azathioprine and have noticed my hair is falling out. At the moment its when I wash it or brush it.Its not noticeable to anyone else but im conscious that my hair doesnt feel as thick as it did. I was going to ask my lupus nurse about it.

Im due to up my meds for the 2nd time later this week and im worried more will fall out.

Sorry im not much help but just wanted you to know your not alone xxx

[purple-lou in reply to LULU85]

It's a big help to know we aren't the only ones. Sometimes it is a lonely place to be. Xxx

[Purpletop in reply to purple-lou]

An increase in lupus activity tends to make the hair growth stop, so what you're seeing is the stage in the hair growth cycle where the old hair falls, it is just that the new one isn't growing. Steroids may result in hair loss but I'm not sure how. I was losing hair before meds, been on steroids for 7 weeks, 6 of them without any hair loss but this week it started again. I blame it on lupus activity and not pleased about it. Will I ever stabilise... V frustrating. Between the hair loss and the moon face from steroids, deep circles under my eyes, weight gain like crazy... I'm surprising myself each day by not remaining under the duvet!

[collette]

Hi ya i have long hair and my hair has been coming out for a long time now. every time I brush it, my brush is full of hair and when I run my fingers through it long strands come out. I am not sure weather its the meds or the illness but it is worrying. I take hydrochloriquine, neproxen and am on steroids. I am mixed race and for me my hair has never grown very fast it has taken me a very long time with products and care for me to grow my hair and it does sadden me that i may loose it all. I totally understand where you are coming from. xxx

[jennyhe]

Hi I have the same problem with my hair I have it falling out in patches and it never seems to grow back, so in the end I shaved the lot off and now keep it that way big decision I know but at least I dont get any bad hair days now and save loads of money I would have spent on hairdressers and products, sorry if I sound glib but it`s a way og coping I ahve a wide variety of hats and a wig which is great but I do find it to hot in the summer, it`s odd but my daughter in law prefers me without my wig I guess she got used to me without hair as most people do.

As for the comment from the family no one can possibly know how we feel unless they have this awful disease but it`s not at all easy to take a comment like that when youa re so low, maybe write a letter to each of your family explaining how you feel those comments are no good to you and you dont want your lovely children hearing them , sometimes words put in print have a greater effect hope this helpsx

[purple-lou in reply to jennyhe]

Thankyou. My partner has also suggested writing a letter. I think it might be worth a try. Thanks for all of your suggestions. Take care. Xx

[jennyhe]

Hi Purple-lou, I used to write letters to my children when they were teenagers it saved such a lot of arguments and upsets over things, I would wait until they went off to school then write the letter and put it on their bed, always finished the letter with the words I love you very much like you say it`s worth a try, hope you find it useful take care x

[megs_tom]

On the subject of writing letters - another idea could be to share the link on facebook to the video thats on the blog post about lupus awareness week. I did this yesterday and my partner had watched it at work and when he came home he said he had watched it and was shocked to realise it takes an average of 7 years for people to get a diagnosis. I also just noticed a change in him as if something had clicked and he kind of understood a little bit more xxx

[purple-lou in reply to megs_tom]

My partner is great and very supportive. I have learnt to only have positive people in my life. It's so hard being this ill and the extra stress of negative people is draining. Still makes me sad though. Xx my friends who have seen the Facebook film were surprised at the contents.

[megs_tom in reply to purple-lou]

My partner is supportive but sometimes I feel he doesn't understand and feels distant when I want to talk about it. But he has admitted to me that it hurts him to see me in pain and feels helpless which makes him distant as he trys to put it to the back of his head. It is sad when people you thought would be there for you are not. Yes I found the film to be short but very good at giving a little insight into lupus!xxx

[purple-lou in reply to megs_tom]

That's exactly the same as my partner. He gets upset and frustrated because he can't fix it! It must be so hard to see the person who you love go through so much. We are lucky to have them. Xx

[CheltnamChild]

Hi Purple Lou, I'm not writing this to be discouraging. I had many heartaches with hair loss. I have had my hair fall out so many times in the past 16 years that I've had Lupus, that it hardly grew back the last time. However, I was able to get a prescription written to pay for several wigs. Making the best of things, I now like my "hat hair". I can change hair styles on a whim, and I wear colorful scarfs when I don't feel like wearing a wig. It's sad, but no one recognizes that my "wigs are wigs" unless I tell them. I've even fooled stylists !

[MandaM]

In September 2010 i started losing my hair whether this be down to Lupus, meds or the annual anniversary of a grandchilds death who knows? I was a VERY hair orientated person, had to be perfect and would spend an hour or so on it every day. By that December i had to do a grade 1 job on my head with clippers as i had not much hair left! To my surprise i took this all in my stride and was happy to wear wigs, free of having to wash and faff every day with my own hair. I carried on clippering until in Feb 2011 when the large spread leopard print had all filled in with new hair and started to grow back my hair under my wigs. A year later i came out from under wigs and now i have a thick head of hair, shiny and glossy, no longer short and spikey as i had it for years but long and feminine and perfect for my wedding in 11 weeks time! So i say ladies, don't fret, have fun with styles and colours of wigs, no-one else cares if you wear wigs and you'll receive lots of compliments & be free of having to do your own hair thus getting out the door is uber quick time lol! Yes it's horrendous in the summer time, bit hot and impossible during the day on a holiday abroad but then you have fun with hats and pretty earrings to distract. I say go with the flow with hair loss, don't let it get to you, have fun with a few good wigs!