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Discussion Starter #1
I have recently commenced Methotrexate (starting at a low dose as directed by my GP because I don't tolerate drugs very well). For the past two weeks I have taken one 2.5mg tablet with a view to increasing this to 3 x 2.5mg.

Today whilst washing my hair, a large clump fell out and I also noticed an increase in shedding whilst drying/brushing etc., yet the lupus lesions on my scalp are going through a relatively calm stage.

I have little hair left to lose so what I have remaining is very precious! As you can imagine I am quite disturbed regarding the above situation and, therefore, nervous about taking my next tablet on Tuesday.

Could Methotrexate cause such a side effect at such a low dose/after this short period of time? One thing I would add is that I've been really under the weather this week with flu.

Thanks in advance.
 

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Aggie,

I am sorry about your hair loss. I have been dealing with this for some time now but I have never taken Methotrexate. I am actually getting ready to start Meth but my hair loss must just be from Lupus, not drugs.

Have you talked to your doctor about this? Does is list hair loss as a side effect on the drug packet information sheet? I understand your frustration and yet I am of no help here to answer your question.

I hope that this is temporary and slows down soon. Sending gently hugs and warm thoughts to you. I hope this gets better.
 

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Hi Karol. I don't know whether it is just coincidence or the medication although saying that, I had other side effects after my first tablet, ie. bloating,headache,aching,feeling like start of a cold.

What I lost today was a large 'ball' of short hairs at the end of my long hair. I supppose it could possibly be breakage rather than hair coming out at the roots. I've been really poorly this week and haven't washed my hair until today. On top of that I haven't had my hair cut in 2 years as I can't face a hairdresser and my hair is very brittle. None of this helps does it? Anyway, I have Emailed my consultant and will await his advice. No doubt I will have to persevere. I'm just so scared though. When is this going to stop?

Anyway,thanks for the hugs.....much appreciated. I hope the Meth goes OK for you.
 

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It sounds more like breakage instead of hair loss yet I can't be sure.

I do think you need to mention this to your doctor.

I am thinking of you and please let me know how you make out moving forward.
 

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Hi Aggie,

Sorry to say hair loss can be one of the side effects of Methotrexate. The hard thing to know is if the Lupus is causing the loss or the Methotrexate.

Three years ago I experienced both hair loss and hair breakage. My hair was long and got very thin then began to break after about 5 inches in length. The bottom looked so thin compared to the top I broke down and cut it. The shorter hair made it look like I had more volume. You really couldn't notice the hair loss.

Take care,
Lazylegs
 

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I have hair breakage right now, and just cut my hair pretty short yesterday to disguise it better. I was tired of having all those 4 inch long lupus hairs flying out of my ponytail all over my hairline. I looked a mess all the time, and so far I'm loving my shorter hair. It looks much better and definitely gives me the appearance of more hair and more volume; and you can't see the breakage now either.

My ponytail was about half the size it used to be - not sure if it's lupus or the hairloss we experience as we age though. My 4 year old daughter now has more hair than me by a mile!
 

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Discussion Starter #8
KarolH;539107 said:
It sounds more like breakage instead of hair loss yet I can't be sure.

I do think you need to mention this to your doctor.

I am thinking of you and please let me know how you make out moving forward.
Thanks :)
 

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Discussion Starter #9
lazylegs;539172 said:
Hi Aggie,

Sorry to say hair loss can be one of the side effects of Methotrexate. The hard thing to know is if the Lupus is causing the loss or the Methotrexate.

Three years ago I experienced both hair loss and hair breakage. My hair was long and got very thin then began to break after about 5 inches in length. The bottom looked so thin compared to the top I broke down and cut it. The shorter hair made it look like I had more volume. You really couldn't notice the hair loss.

Take care,
Lazylegs
My hair is long but I have lost mainly from the crown area so I can disguise it with a headband which thankfully are trendy at the moment! I can't bear the thought of having it cut short, A/because I know it won't suit me but B/because it's my last link to me and my femininity. Does that sound silly?
 

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Discussion Starter #10
Maia;539213 said:
I have hair breakage right now, and just cut my hair pretty short yesterday to disguise it better. I was tired of having all those 4 inch long lupus hairs flying out of my ponytail all over my hairline. I looked a mess all the time, and so far I'm loving my shorter hair. It looks much better and definitely gives me the appearance of more hair and more volume; and you can't see the breakage now either.

My ponytail was about half the size it used to be - not sure if it's lupus or the hairloss we experience as we age though. My 4 year old daughter now has more hair than me by a mile!
So do you think the ball of hair could have been breakage rather than hair loss at the roots?

I too have short hairs at my hairline. I have lost a huge amount from my crown but also have really short hairs sticking up all over this area which aren't really doing anything....don't understand that at all!

It's just so frustrating because I had an episode of hair loss many years ago which my GP now thinks was lupus related and it took years to fully come back (and I mean years!).......only to lose it again just as it was looking good.

This time round I've got excited at new regrowth only for it to fall out again when my scalp flares badly. It's so frustrating I'd pull my hair out it I could afford to!!!!
 

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Pollianna
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Aggie, this might not be bad news. I read that even if you start regain your hair loss can increase dramatically but that's just the change the med is having on the scalp, apparently more falls out and then it stops and then it grows plush......I noticed on the plaq that my hairloss has skyrocketed, loosing far more than before. Maybe it's the darkness before the dawn and this drug will give you back your lush locks ;)
 

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Discussion Starter #12
pollianna;539526 said:
Aggie, this might not be bad news. I read that even if you start regain your hair loss can increase dramatically but that's just the change the med is having on the scalp, apparently more falls out and then it stops and then it grows plush......I noticed on the plaq that my hairloss has skyrocketed, loosing far more than before. Maybe it's the darkness before the dawn and this drug will give you back your lush locks ;)
My hubby said exactly the same thing and I've been advised by Dr D'Cruz to carry on with the medication, so I suppose I will have to try and stay positive and not worry so much. Thanks!
 

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Before I went on the mtx, I had a LOT of hair loss. I had a long hair black & white cat then, and when I made my bed one morning, noticed a LOT of dark hair on my pillow. I remember wondering what the dickens the cat was doing on my pillow. Then, went outside to shake it off, and noticed it was not cat hair, but mine! I was in the hospital around that same time, and my nurses were bringing in clean pillow cases several times a day as my hair loss on the pillow case bugged them. The higher my pred dose, the darker my blonde hair got until I had very dark brown hair. Now, it is back to blonde - going gray, but that is ok.

When I went to the high dose mtx, my hair was growing back in and came in VERY soft curls. I have always had straight hair and to have curls was a gift beyond compare! No more perms! After spending a month visiting my parents in Arizona, my curls straightened out and have not had them back again. Dang!

Talk to your doctor. If it is a side effect of the mtx, you may need to look to a shorter hairstyle. If it is breakage, it may be sle. For me, that was the cause. It grew back once the mtx got a good hold on sle control.
Sally
 

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Discussion Starter #14
Pink Pearl;539637 said:
Before I went on the mtx, I had a LOT of hair loss. I had a long hair black & white cat then, and when I made my bed one morning, noticed a LOT of dark hair on my pillow. I remember wondering what the dickens the cat was doing on my pillow. Then, went outside to shake it off, and noticed it was not cat hair, but mine! I was in the hospital around that same time, and my nurses were bringing in clean pillow cases several times a day as my hair loss on the pillow case bugged them. The higher my pred dose, the darker my blonde hair got until I had very dark brown hair. Now, it is back to blonde - going gray, but that is ok.

When I went to the high dose mtx, my hair was growing back in and came in VERY soft curls. I have always had straight hair and to have curls was a gift beyond compare! No more perms! After spending a month visiting my parents in Arizona, my curls straightened out and have not had them back again. Dang!

Talk to your doctor. If it is a side effect of the mtx, you may need to look to a shorter hairstyle. If it is breakage, it may be sle. For me, that was the cause. It grew back once the mtx got a good hold on sle control.
Sally
Since my initial panic, I've had a word with my consultant/practice nurse and the view is that the hair loss was probably breakage due to my condition rather than the methotrexate.....why does lupus cause breakage? Anyway, I've since washed my hair and it wasn't too traumatic, so maybe it was a combination of other things. As said, I was particularly bad with flu that week and had taken loads of other remedies, so maybe it reflected in my hair?? What I have noticed since I've had this problem is that my hair has got darker (hubby swears I am colouring it) and that I have some corkscrew hairs growing (my hair is poker straight). Very strange indeed. Glad to hear that the methotrexate has worked for you. Hope that it has the same effect for me, however, I've been coping with this hair loss for three years on and off so I can't see it coming back now.
 

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Sometimes those shorter hairs around the edge of the hairline are not due to breakage but hair loss too. It is believed that with lupus the hair falls out too soon sometimes, and when that occurs during a flare then when the flare ends all these shorter "lupus hairs" grow out and look funny. So it may be breakage or it may be loss. It's really hard to say for sure.

For me, I think it's a little bit of both. I have very fine hair that breaks easily, & I went through a flare a few months back which probably also contributed to it.

Not a whole lot that you can do about it other than treat your lupus. That's been my experience at least!
 

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Corkscrew is the perfect name for those crazy hairs I have on the crown of my head. They do whatever they want no matter what I do to them. I have learned to just ignore them these days.

Take care,
Lazylegs
 

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Aggie,
I have been fighting this battle for awhile now, thank goodness when I was born I had enough hair for 2 heads. I have never taken that med so am not sure if that is a side effect or not. I know that can be one of the side effects of plaquenil though. I have a beautiful wig already picked out for the day when I need one and will not have to pay for hair cuts and never have to worry about gray hair. See there are positive things to loosing your hair, that a girl smile it's ok or it will be. Before you know it we will be the really nice wig site lol. I hope this has made you feel just a little better.
 

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Discussion Starter #18
onetay;539773 said:
Aggie,
I have been fighting this battle for awhile now, thank goodness when I was born I had enough hair for 2 heads. I have never taken that med so am not sure if that is a side effect or not. I know that can be one of the side effects of plaquenil though. I have a beautiful wig already picked out for the day when I need one and will not have to pay for hair cuts and never have to worry about gray hair. See there are positive things to loosing your hair, that a girl smile it's ok or it will be. Before you know it we will be the really nice wig site lol. I hope this has made you feel just a little better.
I have already been to London to visit a super lady called Lucinda Ellery who produces integrated hair systems for women with varying degrees of hair loss, just to see what she could do for me if the worse came to the worse. The results are amazing and it's comforting to know there is a solution if needed, however, I still can't help but mourn the loss of my hair and get jealous when I see other women with fantastic looking locks. :sad:
 

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Pollianna
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Aggie hold the hair up to the light, if it's got a small white bulb on the end then it's fallen from the root, if not it's breakage. All or most of mine have little bulbs on the end. Mine is transparent at the front but I would be too afraid to strain the hair by using extentions to fill it out. I have seen stuck on weavy things though that look amazing....hope yours gets better.

I use nioxin and take a hair skin and nails vitamin Dr D'cruz said this wouldn't hurt . I even tried retin A on my scalp to see if it would stimulate growth, might see if i can try that again. Hardest bit of the illness for me to get over this hair loss
 

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Discussion Starter #20
pollianna;539931 said:
Aggie hold the hair up to the light, if it's got a small white bulb on the end then it's fallen from the root, if not it's breakage. All or most of mine have little bulbs on the end. Mine is transparent at the front but I would be too afraid to strain the hair by using extentions to fill it out. I have seen stuck on weavy things though that look amazing....hope yours gets better.

I use nioxin and take a hair skin and nails vitamin Dr D'cruz said this wouldn't hurt . I even tried retin A on my scalp to see if it would stimulate growth, might see if i can try that again. Hardest bit of the illness for me to get over this hair loss
Same here....my hair is past transparent! I have the white bulbs on some of my hairs, however, there was none on the 'ball' that caused me to freak out last week. I'm taking bucket loads of vitamins too. What is Nioxin?
 
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