Hair Thinning and loss

8 posts in this topic

Hello Everyone


Well girls, my hair continues to thin and not show any signs of trying to thicken up,i seem to be losing more then I'm growing! :emoticon-dont-know:


I have been back to my general doctor, who has asked me to have blood tests to see if I have a vitamin deficiency, for example, zinc has been one of them,or other vitamins and,a fasting blood sugar for diabetes.


I am hypothyroid,on meds for years,but I'm always checked regular to make sure I'm on the right dose.


I am so fed up and upset with myself because I seem to have a permanently sore mouth, my hair looks like I've been scared to death and I've lost my hair. I'm not vain by any means but our hair and faces are the things people see and comment on, and,even though they mean well, it hurts when syou get comments like "oh wow what's happened to your hair" :emoticon-crying-kleenex: as I've always had a crop of short thick blonde's an excuse at the moment, and I'm cold without it!!


I'm feeling very low at the moment, I know it's silly, but I feel really lonely and I just don't want to put my usual smile on anymore. I just want to be back to's not going o happen, I know,and I should just pull myself together, but despite taking permitted vitamins from my results. I am on steroids, have been for 2months and hair is coming back in other places: arms/legs/facial and private areas but NOT on my head!


I am at a loss. Could it be down to damage done by the reaction to immune-suppressants (mepacrine) in December, when my face and whole scalp tightened and scaled? Can crest/limited affect our hair? i have looked on our sites about it, but do any of you have any ideas? If not, just a word or two to make me cheer up and a little comfort and I just need you all to be around to there!


Sorry for the self pity, it's not like me at all :emoticon-crying-kleenex:


hugs to all

Lynn :emoticon-hug:

Share this post

Link to post
Share on other sites

Hi Lynn

I don't know what dose prednisone you are on. When I was on prednisone, it was a very high dose for 2yrs. I lost most of my hair from that. Once I went off the prednisone, it came back and I'm really happy with the way it came back. I bought a wig and would suggest that to anyone. I'm not vain whatsoever, but when I lost my hair, I wouldn't go out. I know that people don't think before they speak and they really don't mean it to sound the way it does to us, and I know just how you feel. I know for me it was the medication, and I know that if I ever get bad enough again, that I have to go back on the drugs, well, I have my wig still and to know that my hair "will" come back again, it will be one less worry. I hope the case is the same for you. :emoticons-group-hug: - Lisa

Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

Share this post

Link to post
Share on other sites

Lynnie, I know it can be terrifying loosing your hair. My hair was about 45 inches long and my mom and sister were sitting at my kitchen table and I got up and many long strands stayed on the bench when I got up. Mother said to me what is going on. Go get a comb. I did and she got up and lightly touched the comb to my scalp and started to walk the comb down my hair and it seemed like well over half of it was coming off into the comb without any pulling at all. I was truly frightened as not one of my doctors told me this might or could happen. I went the next day and had about 20 some inches taken off. After a few days my hair stopped coming out. I guess the medications have to come out of our bodies somehow and do damage along the way. It can be scary but you will soon come up with good answers for your friends that will make them laugh along with you. I also have had short hair for many years now. Less frightening when losing it. Not as much in the comb. Keep in touch. I was hoping you would come into the chat room tonight. You are getting some sleep for a change, I guess. Life goes on and we get to go along with it. Many changes along the way but we can meet most challenges.

Strength and Warmth,



Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Hi Lynn,


Honey, I think you have every reason to be upset. It seems we all have something about our appearance that is the one thing that makes us us to ourselves. Mess around with that and you've got one upset woman on your hands. For me it has always been my eyes. Well, the colour hasn't changed, but the eyelids are always red and puffy and we aren't going to mention the bags underneath. (They are big enough I could pack a month's worth of clothes in them.) So something as major as hair loss - well, it's got to be upsetting.


I couldn't find anything about mepacrine causing hair loss, and I'm no doctor nor a pharmacologist (I had trouble spelling that!), but it would seem reasonable to me that given how bad a reaction you had to it, it might well have caused a hopefully temporary hair loss. if your hair is coming back in all the other places, maybe it is just going to take a while longer to come back on your head. What do they say, hair only grows about 1/4 to 1/2 inch (1 cm) a month? Could be it is just going to take a while, right?


One of these days you are going to post about how your hair is growing like gang-busters, I just know it.


Warm hugs,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post

Link to post
Share on other sites

Oh, Lynn, I am sorry to hear that you're still suffering with the hair loss :emoticon-crying-kleenex: I'd hoped that it might have sorted itself out and started to re-grow agin.


I can't tell you how much I sympathise; my very worst fear is losing my hair and I think most women feel the same. It could be the steroids (they certainly cause hair to grow in weird places! ;) ) but I'm sure you said you were on the same dosage as me which is quite low (10/5mgs alternate days). They haven't affected my hair on that dose, but as everyone can react differently to medication that doesn't really help you.


The only thing I can suggest is that you go back to your doctor and let her really know how much the hair loss is upsetting you and ask if she can investigate it further for you. It could have been the immune suppressant you were on that disagreed with you but I would have thought (in my humble opinion and I'm certainly no doctor) that having come off it in December your hair would have started to re-grow, albeit slowly as Jeannie has said.


I do hope that things will improve for you and your hair will be back to it's former glory!

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

I meant to add to my post that I too had hair growing everywhere that it shouldn't and not where it should. My sister came up to me one day and said you have dirt on the side of your face, she was shocked when she went to wipe it off and it was very fine hair. I shaved it off after that. My doctors said it was one of the side effects of the prednisone. I grew hair where I shouldn't and lost it where I should. I didn't have to shave my legs for a very long time as I lost it there too. Now that I'm off it though, everything is back to whatever "our" normal is....sigh....

Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

Share this post

Link to post
Share on other sites

:emoticons-thankyou: To Everyone for replying, it can be a lonely place when surrounded by healthy "normal" people; they, as you say, have no concept of what it's like to have a weird disease that wrecks havoc with your body!.


I can cope with the body bit; its hidden from view, I don't mind that so much. My face is fine, no bags or anything else,a few bits of telangiectasia. My husband says facially I'm still beautiful, bless him, he never makes me feel unattractive and make-up is a blessing but hair or lack of it is more difficult to disguise. It's always been cut short and "choppy" but my hairdresser Mark, who's cut my hair for 18 years, says what's happened to my hair is striking. He used to have to thin it and re-sharpen his scissors after I'd been, the last two times he hasn't even charged me as there's hardly anything to go at!! I see the pity in his face, we used to laugh and make fun saying I had a hedge for a head of hair, now it's a pathetic excuse for one!!


Yes, Sheryl I was in bed, I seem to sleep more these days. I'm still late going but my "sparkle" has just hit the dimmer switch at the moment, I just don't seem to have the stomach for being jolly when I have to fake it. Making a joke of oneself during the working day is very tiring and I just crumple at the end of the day and withdraw.


Hopefully the blood tests will perhaps show what is amiss and we can get on top of it, but as you all have kindly said these episodes happen and hopefully repair themselves on their own. I'm hoping that is the case and I'm annoyed at myself for getting so upset about it; it's silly, but it makes me feel very vunerable and exposed. :crying:


I will let you know what the results are when I get them in a week or so, good or bad.


Take care everyone,

Hugs always,

Lynn :thank-you-2:

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now