Author Topic: hair falling out  (Read 3849 times)

harlin

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hair falling out
« on: January 20, 2010, 02:16:12 PM »
Hi all
Well here I am with another problem. Seems they keep coming and coming!!

Is anyone elses hair falling out?? Is it the meds or Sjs?

harlin
Female 56
RA, Sjogrens, Fibromyalgia, Reynolds, Osteoarthritis
IBS, Gerd, Restless leg syndrome
Plaquinel, Methotrexate, Horizant, Folic Acid, Savella, Nexium, Vitamin D, Flexiril, Actenel, Rastasis, Gentel,

inga

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Re: hair falling out
« Reply #1 on: January 20, 2010, 04:14:19 PM »
If I am correct, Plaquenil can make you lose your hair.  My hair has gotten very thin, and I am not on Plaquenil.  Tried it and I itch too bad, besides, I ended up on IVIg.  That is not supposed to make you lose your hair.  Maybe I am just gettin' old.  What I have grows like crazy tho!

kwolfsheimer

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Re: hair falling out
« Reply #2 on: January 20, 2010, 04:35:45 PM »
My hair is falling out like crazy.  I have a bald spot on the top of my head.  Yes-- I'm tiiiiiiired and have so many other problems, but the hair thing is probably the most visible  aspect of my disease.  Everybody notices.  I have Lupus and SJS;  my doc is really doing extensive tests on my thyroid.  I am not on Plaquenil, so my issue is not that.  My hair has also become incredible grey suddenly and the texture has changed.  It doesn't look healthy.

If anybody has a "fix-all"  let me know.  I have tried some shampoos. My OB-Gyn suggested Nioxon (? spelling) but it really hasn't helped any.  I have been warned against Rogaine, because if you don't continue with the treatment, your hair will fall back out. I color my hair and do the "comb-over", but anybody can see through my part and see the hole there.  It's really embarassing.

My other rheum. didn't seem very concerned.  I have an appt in Feb with a new guy and it can't come fast enough!! 

Epson

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Re: hair falling out
« Reply #3 on: January 20, 2010, 05:21:10 PM »
I wonder if the thinning of hair some folks experience isn't do to stress, physical and mental.
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Dolly Dimples

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Re: hair falling out
« Reply #4 on: January 20, 2010, 05:28:14 PM »
   Your bang on here Epson,

                      Stress can and does cause hair loss.

                   A friend of my son wasgoing through stress, and he lost a lot of hair.
                         Diagnosis was Alopecia !

 

                                           He is fine now and hair growing again.
                              It's a wonder we here aren't all as baldy as coots !!

                                                               Harlin, please see your Doc soon as , he will probably help..
                                                                                                      Dolly                                                        

Scottietottie

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Re: hair falling out
« Reply #5 on: January 20, 2010, 06:55:31 PM »
Hi Harlin  :)

Plaquenil can cause hairloss but certainly doesn't always do so. An underactive thyroid can certainly cause hairloss too and lots of sjoggies have thyroid problems. My hairdresser suggested taking a zinc supplement to restore hair and I've been taking it ever since I lost hair when my thyroid went wrong.

Take care - Scottie  :)
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sewandsew

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Re: hair falling out
« Reply #6 on: January 20, 2010, 08:25:28 PM »
This might seem strange but I am no longer growing hair in my arm pits.  I wonder if it is just falling out as described above. 

harlin

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Re: hair falling out
« Reply #7 on: January 20, 2010, 09:01:22 PM »
sewandsew
I to do not have arm pit hair or on my arms or legs!! Strange. didn't realize they go together. I have blood work last of Jan and see Rheumy the next week. Should I call her??? I don't know how long this has been going on.
thanks everyone harlin
Female 56
RA, Sjogrens, Fibromyalgia, Reynolds, Osteoarthritis
IBS, Gerd, Restless leg syndrome
Plaquinel, Methotrexate, Horizant, Folic Acid, Savella, Nexium, Vitamin D, Flexiril, Actenel, Rastasis, Gentel,

Bernice

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Re: hair falling out
« Reply #8 on: January 20, 2010, 09:59:28 PM »
Strange uh?
Well for me it's the armpits and below, if ya know what I mean. Thus far my head is O.K minus the hair I've cut off!

theosof

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Re: hair falling out
« Reply #9 on: January 20, 2010, 10:11:32 PM »
My rheum told me the reason for the hair loss is due to the changes in the skin r/t the way the disease affects the moisture producing glands. I have lost a lot of hair on my arms, legs and underarms but nothing from my head. Someone told me that b12 is good for your head hair- Mine has gotten very limp, no body- I've had to wear it short now though I always wore it long. I'm in the process of trying to find a shampoo that will help. But good luck to you and finding a new rheum. if you are in the Phila area there is a Sjogren's clinic at Presbyterian MC.

eyeamdry

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Re: hair falling out
« Reply #10 on: January 20, 2010, 10:13:08 PM »
My husband told me just a couple of days ago I should get some Rogaine.  I just looked at him and said "it's prescription."  He told me to ask my dr for some.  Well, he isn't exactly Tom Selleck!!  Either in looks, height, or hair.  I didn't take it too bad, though, because I'm always hollering about it.

I have to put color in on a regular basis...grey roots show up very quickly in brown hair.  I also get a perm and that helps fill in spots.  I know you shouldn't process your hair, but I will not go white as long as I can buy some hair color over the counter and put it in, or have my daughter do it.  As long as I'm breathing.  My older sister just passed away from cancer and her hair had been colored and permed and cut nicely about 2 weeks before she passed.  Her hairdresser came to her house while she was still at home.  I'll try to keep mine up as long.  I know her hairdresser "did" her hair after she died, although the hairdresser did not tell me, I saw some instructions written down.  

Well, I get a perm tomorrow so I'll feel better for a few weeks.  I don't know if it's Plaq or Tamoxifin or other meds, or just getting older.  Lucy

JannaLee

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Re: hair falling out
« Reply #11 on: January 21, 2010, 01:02:02 AM »
I've been losing hair for the past several years and really miss it.  I used to have thick lush stuff.  Now I have thin dry straw.

My hair loss was extreme before Plaquenil.  I think it has ebbed off a little since starting the medication.

This is one of those parts of Sjs. that makes me real sad.

Janna

sleepy

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Re: hair falling out
« Reply #12 on: January 21, 2010, 05:40:11 AM »
My hair loss/bleaching started after I started Plaquenil, coincidence? Not sure. It turned an awful orangey color, brittle and it started falling out. I stopped the Plaq. in Sept and it is still falling out. I went to a dermatologist and he says it is not from the Plaq because it would not be falling out to this day if I stopped it in Sept. He said it was just from having Sjogrens. He suggested over the counter generic Rogain and oral Biotin, which I went on and I now have Biotin shampoo to see if that helps.

I went through all the blood tests and it is not anything else. I have no more or less stress than I have ever had before so I do not think that it is from stress. I have noticed that my symptoms are worse without the Plaq so I called the Rhuemy and went back on the Plaq this past Tuesday. I guess it is a quality of life issue, daily severe pain/fatigue or baldness? I'll pick to lose the pain/fatigue. I have fallen asleep at work, I have to pull over on the hwy in the afternoon and take a 20-30 min nap.

It just seems like sometimes with this disease you are all alone because my friends have never heard of it and I really don't want to go to work and tell them my health issues. My family will be good for a week if I tell them I really need the help, but then I think because you really do not look sick, they forget to be more helpful.

I am thankful that this site exists, because it is a safe place where you can express yourself and people understand.   

Nans

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Re: hair falling out
« Reply #13 on: January 21, 2010, 07:27:35 AM »
My hair has been thinning for quite some time now, but it had accelerated in the past several years.  I use monoxidil - generic Rogaine.  It's OTC.  I also use the shampoo called Nioxin and take biotin. 
I don't think it's made me grow hair, but it seems to have at least slowed down the loss so I guess I'll just keep up with my routine.  I don't have a lot of hair, but what I do have grows quickly!  My nails do too - I think that might be due to the biotin.

I have noticed that my arm pit hair and the hair on my legs have gotten sparse, softer and a bit lighter in color.  I figured it was just because I was past menopause.

I have read that plaquenil can go either way - either stop hair loss or cause it - just like it can cause some to gain weight (moi) or lose it.  Mine started falling out long before I started to take plaquenil.

Bucky

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Re: hair falling out
« Reply #14 on: January 21, 2010, 02:07:00 PM »
I have noticed quite a bit of hair loss on the top of my head (crown area) through the years (since son was born 14 yrs. ago and then had an underactive thyroid).  I have baby fine hair to start with, so any additional hair loss is quite noticeable.   :(  It's only on top that it's really thin.  I keep asking my hairdresser about this.  She says all the shampoos that claim to regrow hair don't work.  I have gotten some shampoos that are made for fine hair and it does help "plump" up the hair follicles.  Unfortunately, it doesn't give me more hair, just helps make what I have look fuller.  My hairdresser also suggested I change my part.  Doing a side part versus a center part.   

If people notice it, they aren't saying anything.  I notice it though and it does bother me.  I try to hide it as best I can.

To some people hair is just hair.  I know that.  I don't know how to explain how it makes you feel when you are losing something so visible that everyone can see.  With a cancer patient who is undergoing chemo treatments, hair loss more or less comes with the treatment.  It grows back.  I am not a cancer patient.  I haven't seen any "regrowth" of my hair - if anything, I see more hair loss each time I comb my hair.  I'm trying not to be so vain - my hair doesn't define me, but I do like having hair on my head!

My hairdresser also suggested that I try one of the hair pieces they make for people with alopecia.  They have combs that just clip into your natural hair to give you more volume.  Hey, the movie stars gets extensions and wear wigs, we can too.   ;D 

I have a girlfriend who has worn a wig ever since I have known her (over 20 yrs.) - I'm going to call and ask her about all this.  I don't know where she gets her wig(s) at - whether local or thru the internet.  I would like to try some on first before I go and order something.

Just one more thing to add to our daily routine . . . . a girl is going to need an extra hour in the morning just putting all the lotions, potions, taking pills, mouth care, eye drops, hair pieces in place to just get out the door.   ;D     Ahhhh, the joys of Sjogren's. NOT!!    ::)

Bucky
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