[KarolH]

Hi Everyone,

Lately, probably the last 3+ months I have noticed that my hair has thinned all over my head and I know that a lot of us complain about this.

But, within the last 2 weeks the hair in my temple region has literally fallen out.

I am EXTREMELY CONCERNED and need to know if this is common or how many of you have had this happen as opposed to just thinning all over.

I think my balding is worse then my husbands now and I really don't know what to do. I was in tears this morning and I am NOT a vain person at all.

 

[Maia]

I tend to lose hair all over, but especially at the sides of my head when in a lupus flare. I've never actually had the bald look, it is visibly thinner though when that happens & I will get many "lupus hairs" around the front/side {these are short hairs that appear - much shorter than the rest of my hair at the time}. When I had all those lupus hairs, I ended up cutting my hair very short so it wasn't so obvious & I liked that a lot better.

For you, it could be the lupus, or it could be some sort of nutrition deficiency related to your stomach problems and inability to keep food down recently. Most likely, a combination of both. Women do lose hair as they age too, but usually not that quickly.

If it's really bad, they make some great wigs these days. Some women can really make wearing hats every day stylish as well - too bad it's not the 20's/30's anymore when women wore hats all the time! Hope it improves soon.

 

[KarolH]

Thanks Maja. I go back to my GI doctor Monday and will ask to write a blood script to check my nutrition levels. Your right it may be this too.

My hair is already short as I long horrible in long hair. I do have some hairs that are shorter then others yet hard to tell due to my hair being so short to begin with.

I really am very concerned about this issue. A wig is a good idea yet I cant see myself wearing one. It is so much hair loss so suddenly it is more then concerning.

 

[Sage Hen]

Hi Karol,

I really, lost a lot of hair, before getting on Cell Cept. It was especially bad, on my forehead and temples. You could look through it, and see my scalp.

I would have people talking to me..just stare at my hair. I felt like..saying, here I am..please look into my eyes..:

The short hairs are growing out now, but on top of my head, they stand straight up.. I have to put hairspray on them, and smooth them down.
My daughter in law..mentioned it to me the other day, and I had to tell her, it was my lupus hair growing out.

I am sooooo happy, to be able to say that. I have some hair again.

Maia, gave you some very good insights..Karol.

Best Wishes,
Sandy

Maia, gave you some good insights..

 

[Aggie69]

Hi Everyone,

Lately, probably the last 3+ months I have noticed that my hair has thinned all over my head and I know that a lot of us complain about this.

But, within the last 2 weeks the hair in my temple region has literally fallen out.

I am EXTREMELY CONCERNED and need to know if this is common or how many of you have had this happen as opposed to just thinning all over.

I think my balding is worse then my husbands now and I really don't know what to do. I was in tears this morning and I am NOT a vain person at all.

I believe that dramatic hair loss at the temples can be a sign of low ferritin levels so it might be prudent to get this checked just to be sure.

 

[Aggie69]

Hi Karol,

I really, lost a lot of hair, before getting on Cell Cept. It was especially bad, on my forehead and temples. You could look through it, and see my scalp.

I would have people talking to me..just stare at my hair. I felt like..saying, here I am..please look into my eyes..:

The short hairs are growing out now, but on top of my head, they stand straight up.. I have to put hairspray on them, and smooth them down.
My daughter in law..mentioned it to me the other day, and I had to tell her, it was my lupus hair growing out.

I am sooooo happy, to be able to say that. I have some hair again.

Maia, gave you some very good insights..Karol.

Best Wishes,
Sandy

Maia, gave you some good insights..

Hi Sandy. I was wondering whether you can describe your hair loss? I haven't been diagnosed yet but mine is worse at my temples (had a ferritin level of 11 when it started so that didn't help) and my crown (actually have bald areas). My hair has generally thinned all over. I have spurts of regrowth, then I get a flare up of my 'rash' and it falls out again. Initially the loss was dramatic (came out in handfuls). Now it is just very brittle, slow growing and I have short hairs sticking up all over the place which aren't doing much. The derms are stumped because although my loss is severe they can't see a pattern which indicates any specific condition. My biopsy showed a bit of scarring but the remaining follicles were relatively healthy. I've been coping with this for 3 years now so can understand how you feel. Glad to hear that you have some new hair and feel a bit more positive.

 

[KarolH]

I believe that dramatic hair loss at the temples can be a sign of low ferritin levels so it might be prudent to get this checked just to be sure.

Thanks Aggie. On Monday my GI doctor will write a script to check nutrition levels per Maia advice so I will ask her to add it to the list. Interestingly enough my last ferritin level was slightly low so maybe now it is very low and that may be the answer.

Anyway, Thanks so much for all of the replies here. I just love you all!!!:wink2:

 

[Sage Hen]

Hi Everyone,

There are shampoos, on the market to stimulate hair regrowth. They are a bit spendy..but, may be worth a try.

I did resort to buying a wig..It is quite pretty really, and cut in a nice style.

It was hot to wear in the summer..mos, but, I don't need to wear it now..I am happy, to report.

Aggie, my hair loss was basically, what you describe. All over thinning, but more severe on the top and temple area of my head.

Hope, this helps..

Love,
Sandy

 

[Lily]

Hi all,

Sorry for those of you who do have this to a severe degree, I've thankfully only suffered mildly and once the disease was under control it started sprouting new lupus hairs. At times of disease activity though I do notice it especially around the temple areas it gets quite thin but it does regrow back though.

With you Karol I agree it's worth checking for a nutritional cause first, but it may also be due to lupus activity. Which meds are you on right now?

If it's not obviously either of those then don't overlook the thyroid as a cause, many docs do when we have so much else going on and that can be a very obvious cause in many people.

Nioxin is one of those products that many people here have had great success with as far as hairloss goes.

love
Lily

 

[Aggie69]

Thanks Aggie. On Monday my GI doctor will write a script to check nutrition levels per Maia advice so I will ask her to add it to the list. Interestingly enough my last ferritin level was slightly low so maybe now it is very low and that may be the answer.

Anyway, Thanks so much for all of the replies here. I just love you all!!!:wink2:

During my journey on trying to find the cause of my hair loss I was told by a derm that for hair to stop shedding (beyond what is normal) ferritin levels need to be around 40 and for regrowth they need to be 70 -90. Obviously if there is another underlying cause running alongside (which I believe the case is for me) it won't be so cut and dry......excuse the pun!

 

[KarolH]

With you Karol I agree it's worth checking for a nutritional cause first, but it may also be due to lupus activity. Which meds are you on right now?

Hi Lily,

I have looked into the meds I take to see if any of it can cause hair loss and really none of them do. It does say Plaquenil can and yet it also says that Plaq helps with re-growth so that is a contradiction in itself.

I am on Fentanyl patch for pain, Plaquenil 400mg daily, Nexium 120mg daily (triple doses) A Multi Vitamin and extra Vitamin D too. I just started taking Fish Oil and Flaxseed oil also.

This is what I take as I have boycotted most medicines for a lot of reasons. I am not on steriods and have not been for a long time.

My Rheumy doctor called this morning and told me 4 things cause drastic hair loss........Plaquenil, Steriods, Stress and Lupus.

Ummmmmm, well ok then there is my answer. I have 3 out of the 4!

 

[debatat]

Hi Karol

Sorry to hear of your hair loss, that can be scary. I have had that too and in exactly the same place. I had mine cut short to try and hide it.

This disease can be so cruel sometimes an awful rash and the hair loss, swollen body then some thoughtful soul tells you ' how well you look'!!!

Take care of yourself, is it cold enough for hats where you are? Its freezing here. You can get some very pretty ones.

Warm wishes

Deb

 

[Aggie69]

Hi Everyone,

There are shampoos, on the market to stimulate hair regrowth. They are a bit spendy..but, may be worth a try.

I did resort to buying a wig..It is quite pretty really, and cut in a nice style.

It was hot to wear in the summer..mos, but, I don't need to wear it now..I am happy, to report.

Aggie, my hair loss was basically, what you describe. All over thinning, but more severe on the top and temple area of my head.

Hope, this helps..

Love,
Sandy

Thanks Sandy. I'm just getting so desperate not knowing the cause and wondering whether it will ever grow back. I'm due to see Dr D'Cruz next week so hopefully he will be able to help.