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Old 10-15-2006, 02:59 PM   #1
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Question Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

I Was Diagnosed With Hep C In May. Treatment Will Be Started In January So I Can Get Through My Busy Months Business Wise And Also Have Holidays With My Family.

My Concerns Are About The Treatment. I Can Read All Of The Side Effects About Flu Like Symptoms Etc. I Want To Know If My Hair Will Break Off, Will I Be Able To Continue Work, Will I Dry Out And Look Like A Prune? I Have Been In Denial And Still Maybe. We Have No Idea How I Got Hep C. None Of The Usual Apply To Me.

I Am In Sales And In The Public All Of The Time. Will I Feel Like It And Look Ok?

I Would Appreciate Any Response. Thanks-kikitwo

 
Old 10-15-2006, 05:44 PM   #2
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Quote:
Originally Posted by kikitwo
I Was Diagnosed With Hep C In May. Treatment Will Be Started In January So I Can Get Through My Busy Months Business Wise And Also Have Holidays With My Family.

My Concerns Are About The Treatment. I Can Read All Of The Side Effects About Flu Like Symptoms Etc. I Want To Know If My Hair Will Break Off, Will I Be Able To Continue Work, Will I Dry Out And Look Like A Prune? I Have Been In Denial And Still Maybe. We Have No Idea How I Got Hep C. None Of The Usual Apply To Me.

I Am In Sales And In The Public All Of The Time. Will I Feel Like It And Look Ok?

I Would Appreciate Any Response. Thanks-kikitwo
Hi Kiki,


just two or three comments: first, why are you seeking treatment? if you are sick, are experiencing harsh symptoms of liver disease (something that is pretty rare with hep c), or if your biopsy has told you that fibrosis is advanced (past stage two, for example), then the side effects will not be of very great consequence compared to the liver disease you may be faced with.
If these factors are NOT true for you--if you are not actively sick with liver disease(and no, being infected with the c virus is not in itself the same as having a liver disease), nor are you told that you are heading measurably toward cirrhosis, then believe me, the side effects are most likely to be much worse than whatever the hepc has been doing to you to date. Hair loss will be the least of your worries. and "flu like" is a euphemism, a sugar-coating.

I think some people get through it all with few, or few serious, side effects, but I don't think that is the common experience.

the important thing is to make sure you have good reason for seeking treatment, and just carrying the hep c virus is, in many cases, not in itself a persuasive reason. Knowing your reasons well will prove very important if you expect to make it through the hard months.

good luck.

sean

Last edited by sean; 10-15-2006 at 05:49 PM.

 
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Old 10-15-2006, 07:58 PM   #3
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Dear Kikitwo,I ditto everything Sean has just told you. You really need to know what the disease process is all about, the different stages and what they mean, what the clinical info means (labs, biopsy, why they do a biopsy and even if you need one at this point, what clinical symptoms are and what triggers them.
Then research the side effects....they really do vary, but what I'm finding is exactly what has already been stated....the majority of us feel pretty lousey. It seems to taper off after the first 3-4 days. Keep an open mind, allow some time off to start with to see how you are affected...if you really choose to tx at this time. Always try a second opinion - perhaps with a teaching institute. Infomation is good, but get it from reputable and varied sources.
By the way....I'm going into my forth week and I'm finding some hair thinning, but not complete loss. The hair is the least of your worries. Don't mean to spook you, just being realistic.
Good luck. Michelle

Last edited by MKMMJ; 10-15-2006 at 08:00 PM.

 
Old 10-26-2006, 12:35 PM   #4
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

I am in week 35 of TX and did not lose hair in the first 3 months, but then it started falling out and breaking off. I have lost about 2/3 rd's of it now, with 3 months to go. Yes it bothers me at times, I keep getting it cut shorter as it was longer, but it will grow back. I lost it about 10 years ago as well when I was very sick in hospital for 3 months, the same time I contracted the HepC, and it grew back even thicker!
I take my shot on Friday nights, and it seems to really hit me in about 12 hours - I feel like I've been hit by a truck. Saturdays are write-0ffs and I am too sick to do anything except mostly sleep. By Sunday its usually a bit better, and I also take off most Mondays as a holiday (its great i am allowed to do that) So I am a lucky one, being able to work. But thats about all I can do...housework is almost an imposibility as my hemoglobin is bad and I have been badly anemic at times having a lot of breathlessness and very weak. Stairs are a killer. I cant afford the drug that would help me -something for my bone marrow - it costs more than the TX.
As for the skin, not too bad for me.I Drink lots of water and dont shower as often. Found a newer liquid soap -Johnsons Softsoap, that softens and seems to help.
Good luck in your decision-making.

 
Old 10-26-2006, 09:45 PM   #5
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Quote:
Originally Posted by Debralep
I am in week 35 of TX and did not lose hair in the first 3 months, but then it started falling out and breaking off. I have lost about 2/3 rd's of it now, with 3 months to go. Yes it bothers me at times, I keep getting it cut shorter as it was longer, but it will grow back. I lost it about 10 years ago as well when I was very sick in hospital for 3 months, the same time I contracted the HepC, and it grew back even thicker!
I take my shot on Friday nights, and it seems to really hit me in about 12 hours - I feel like I've been hit by a truck. Saturdays are write-0ffs and I am too sick to do anything except mostly sleep. By Sunday its usually a bit better, and I also take off most Mondays as a holiday (its great i am allowed to do that) So I am a lucky one, being able to work. But thats about all I can do...housework is almost an imposibility as my hemoglobin is bad and I have been badly anemic at times having a lot of breathlessness and very weak. Stairs are a killer. I cant afford the drug that would help me -something for my bone marrow - it costs more than the TX.
As for the skin, not too bad for me.I Drink lots of water and dont shower as often. Found a newer liquid soap -Johnsons Softsoap, that softens and seems to help.
Good luck in your decision-making.

Hi Dora,

I am so sorry to hear that your insurance won't cover the cost of the procrit or equivalent for anemia. So far for me the worst symptoms have been gastrointestinal disturbances (the most discomfort), and anemia (the most scary and debilitating, by far). But I have been covered for the procrit, and after several weeks (it takes a while) on it the anemia is lifting, and what a relief. It is horrible to me that you cannot avail yourself of this.

The health care/health insurance system in this country needs a serious, serious overhaul.

best to you

sean

 
Old 10-27-2006, 05:36 AM   #6
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Quote:
Originally Posted by sean
Hi Dora,

I am so sorry to hear that your insurance won't cover the cost of the procrit or equivalent for anemia. So far for me the worst symptoms have been gastrointestinal disturbances (the most discomfort), and anemia (the most scary and debilitating, by far). But I have been covered for the procrit, and after several weeks (it takes a while) on it the anemia is lifting, and what a relief. It is horrible to me that you cannot avail yourself of this.

The health care/health insurance system in this country needs a serious, serious overhaul.

best to you

sean
Hey Sean, I know what you mean by the gastro side effects....for me it's been like a bad case of nonstop spastic colitis. If I even look at something to eat or drink - well, I always make sure there's a bathroom close by. I did find though, by taking 1 Imodium (ok'd by the doctor) every other day that it really helps to control the situation. It also allows me to nourish my body...food stays in it long enough to be absorbed or digested.
I was a big Splenda user before all this. I read in the Peg literature that all artificial sweeteners are out due to the increase in gastrointestinal side effects.
Hope this info helps (if you weren't already aware of it).
Good luck on your continued TX. Regards, Michelle
PS....you're absolutely right, our healthcare system is deplorable!

Last edited by MKMMJ; 10-27-2006 at 05:39 AM.

 
Old 10-27-2006, 10:59 PM   #7
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Hey Sean, this is Avalon. I haven't posted here in quite awhile but I do remember you. As I recall, at that time you were debating whether to begin treatment. So it sounds as if you have? How long have you been on and how are you doing with it? I tried it in the summer of '05. My enzymes had been starting to run high, so I decided to go for it. It was the 6-month version. I started out OK, and in a couple weeks I remember saying, "If this is as bad as it gets, I'll be able to hang." I still have the note with my symptoms at the time: Stomach issues, rash on arms/chest, dry mouth, cracks in sides of mouth, and shortness of breath. But then as the weeks went by, the symptoms got worse. I couldn't eat, but yet had to keep something in my stomach at all times due to the gnawing hunger. I had to keep food/drink with me at all times. My tongue got sore and felt like it was on fire. I couldn't go up a flight of steps without being winded. Eventually, at week 5, I was having a meltdown so I called my gastro. He told me to go off it, it was not worth going through all that when my fibrosis level was minimal. I felt really bad, because a friend had also started the tx right before me and she was hanging in there despite her symptoms (which apparently were not as bad as mine -- but she did lose her hair, by the way). So I went off, and have had bloodwork since then but thank God, my enzymes have been normal. I must caveat that I am ultra-sensitive to drug side-effects so my experience may be extreme compared to others.

As for the friend, well, she completed the 6-month tx. Her bloodwork showed she had cleared the virus. Some months later, it came back. She said they told her this time she'd have to do tx for a YEAR. I encouraged her to get a biopsy first, which apparently they never did on her! Turns out her liver damage is minimal too, so she's holding off on any further tx.

Anyway, sorry for rambling on, but what finally made you take the plunge?

 
Old 10-28-2006, 09:26 PM   #8
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Quote:
Originally Posted by Avalon
Hey Sean, this is Avalon. I haven't posted here in quite awhile but I do remember you. As I recall, at that time you were debating whether to begin treatment. So it sounds as if you have? How long have you been on and how are you doing with it? I tried it in the summer of '05. My enzymes had been starting to run high, so I decided to go for it. It was the 6-month version. I started out OK, and in a couple weeks I remember saying, "If this is as bad as it gets, I'll be able to hang." I still have the note with my symptoms at the time: Stomach issues, rash on arms/chest, dry mouth, cracks in sides of mouth, and shortness of breath. But then as the weeks went by, the symptoms got worse. I couldn't eat, but yet had to keep something in my stomach at all times due to the gnawing hunger. I had to keep food/drink with me at all times. My tongue got sore and felt like it was on fire. I couldn't go up a flight of steps without being winded. Eventually, at week 5, I was having a meltdown so I called my gastro. He told me to go off it, it was not worth going through all that when my fibrosis level was minimal. I

felt really bad, because a friend had also started the tx right before me and she was hanging in there despite her symptoms (which apparently were not as bad as mine -- but she did lose her hair, by the way). So I went off, and have had bloodwork since then but thank God, my enzymes have been normal. I must caveat that I am ultra-sensitive to drug side-effects so my experience may be extreme compared to others.

As for the friend, well, she completed the 6-month tx. Her bloodwork showed she had cleared the virus. Some months later, it came back. She said they told her this time she'd have to do tx for a YEAR. I encouraged her to get a biopsy first, which apparently they never did on her! Turns out her liver damage is minimal too, so she's holding off on any further tx.

Anyway, sorry for rambling on, but what finally made you take the plunge?

Hi Avalon. Holding off is almost certainly the right decision if you have only minimal liver damage and no symptoms to speak of. especially if, in trying it,you discover that you are not one of the lucky few who get by with lesser side effects.
my reasons for deciding to treat, after five years or more of resisting were not entirely rational: yes a second biposy showed some progression (my do said from stage 1 to 'stage 1 and a half.' Not alarming, but not a change for the better, either. my liver panel scores are not nearly so critical, we know, but over five years mine showed a quite consistent increase, every six months (that's how often the doc monitored it), slowly going from just over twice normal to three or more times normal. I do know from the research I've seen that this kind of trend--when consistent like mine--almost always correlates to worsening liver damage. the biopsies were consistent with this trend, although I had not reached any alarming stage as yet.

but finally, it was the birth of two little girls at once two years ago that tilted the calculus for me and my wife. we began a conversation the day I found out I could not buy additional life insurance (to cover the new bairns) unless and until i was treated and undetectable for at least 12 months. this was not in and of itself a killer consideration, but it set off a cascade of thoughts and feelings and discussions, and over the next months, my mind changed, just as my life had changed. babies changes everthing. that's the only explanation I can give you.
Oh, and that I knew as genotype 2 i would have less hell to go through than our suffering type 1 brothers and sisters. If I were a type 1, it might have taken yet another biopsy a coupole of years further down the line, showing deteriotation, even worse test results, or something, to get me there.

I've had 8 weeks of pegasys and riba so far. The first week was a breeze, second not horrible either, although I noticed mild versions of almost everything you'd expect: g.i. troubles, headache, dizziness, joint and muscle ache, tired, tired, tired. but no biggie.
then somewhere along then I got a headache that lasted for the next month, unremittingly. I lost all ability to get enough oxygen--gasping for breath even when sitting still, became WEAK--i am only mildly athletic, but the change was stunning--I couldn't even ride my bike to the local store anymore, couldn't get up one flight of stairs without resting, walked only two or three blocks before my body cried out for a rest (I wouldn't do it, but pushed through--still, it was a bear, a bear. )
I needed a short nap at least every mid-morning, and again every mid-afternoon, and often a third quick nap before actual sleep time. I missed a couple of days of work. I spent at least a couple of the days I WAS at work in such a haze that I did nothing useful and besides, scared some colleagues into thinking I reall was the mumbling idiot that they had always suspected. I always felt physically very uncomfortable, but on two or three occassions it reached the level of painful fevers, shakes, the works.
I went from pretty okay, to a mess. It took only a couple of days. My mood was okay, though, most of the time, considering I was losing most of what I thought of as why we get up in the motning. oh well

We discovered the riba had given me anemia, pretty sudden and deep anemia. procrit was prescribed (oh great! another injection), and things continued to get worse for two, three more weeks, but finally started to lift around two weeks ago--definitely more breath now, less queasiness, dizziness, much less exhaustion. procrit takes from two to six weeks to start to work, then weeks more to get up to speed. so I hope to see more improvement.

Other symprtoms are a mixed bag--the creeping, itchy, dinosaur skin i developed on both arms has been adequately if not perfectly controlled with cortisone. (I had scratched myself bloody, repeatedly, especially on one arm) the diarrhea (whew! this is more debilitating than severe anemia, or can be) is controlled with immodium every couple of days--and it's getting to be more days between doses as the weeks have gone by. Muscle aches just have not recurred after about week four--none at all. fevers ditto.

the nausea, my one absolute worst experience in life, does not go away entirely, (and unfortunately, this is also one of the only important side effects of the procrit which is otherwise a pretty benign drug. so now I have two shots per week that lead to nausea.) I have not found the cure for this one, and also experience the hunger you described. a conumdrum---sick to the stomach but desperate for food. this hunger might be the body trying to fight the anemia.

but the improving trend is noticeable. the headache quite gone, the g. i. tract recoverering from its manic-depressive experiments, the shortness of breath and weakness getting better, even if not nearly so fast nor as dramatically as I desperately want them to do. still, better overall.

I don't have enough hair to begin with to notice loss, but I think I've escaped that one.


so that's my story to date, thanks for asking. Oh! My viral count came back undetectable at four weeks, so this certainly gives me some encouragement. And, if the side effects keep moderating--I just knocked on wood--I can certainly make it through.

thanks a lot for asking.
Peace.

sean

 
Old 11-06-2006, 07:32 AM   #9
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

My husband did the treatments and is almost a year post tx. He is still negative. His hair just stopped growing as much. I have long hair and will be starting soon too. I have an appointment on the 14th of this month and I am sure they will order the meds then. I have lost my hair before from being really sick and coming off drugs and a lost pregnancy. It is finally back and long and nice. I don't want to lose my hair either. But I guess if I do it will grow back. I do know there is a shampoo for cancer patients that supposedly works great and I am going to try that. As a girl I would not mind losing the weight my husband did. He lost 20 to 30 lbs. He was just tired a a lot but never missed work. He noticed that drinking a lot of water made him feel a lot better. Don't forget that. He did have diareah the hole time. He was moody but got on some ati depresants and they helped. He only had to do six months. I will only have to that too. The first two weeks were the worst but then the effects of the shots wore off and he was just tired easily.

 
Old 11-06-2006, 07:42 AM   #10
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Quote:
Originally Posted by sean
Hi Avalon. Holding off is almost certainly the right decision if you have only minimal liver damage and no symptoms to speak of. especially if, in trying it,you discover that you are not one of the lucky few who get by with lesser side effects.
my reasons for deciding to treat, after five years or more of resisting were not entirely rational: yes a second biposy showed some progression (my do said from stage 1 to 'stage 1 and a half.' Not alarming, but not a change for the better, either. my liver panel scores are not nearly so critical, we know, but over five years mine showed a quite consistent increase, every six months (that's how often the doc monitored it), slowly going from just over twice normal to three or more times normal. I do know from the research I've seen that this kind of trend--when consistent like mine--almost always correlates to worsening liver damage. the biopsies were consistent with this trend, although I had not reached any alarming stage as yet.

but finally, it was the birth of two little girls at once two years ago that tilted the calculus for me and my wife. we began a conversation the day I found out I could not buy additional life insurance (to cover the new bairns) unless and until i was treated and undetectable for at least 12 months. this was not in and of itself a killer consideration, but it set off a cascade of thoughts and feelings and discussions, and over the next months, my mind changed, just as my life had changed. babies changes everthing. that's the only explanation I can give you.
Oh, and that I knew as genotype 2 i would have less hell to go through than our suffering type 1 brothers and sisters. If I were a type 1, it might have taken yet another biopsy a coupole of years further down the line, showing deteriotation, even worse test results, or something, to get me there.

I've had 8 weeks of pegasys and riba so far. The first week was a breeze, second not horrible either, although I noticed mild versions of almost everything you'd expect: g.i. troubles, headache, dizziness, joint and muscle ache, tired, tired, tired. but no biggie.
then somewhere along then I got a headache that lasted for the next month, unremittingly. I lost all ability to get enough oxygen--gasping for breath even when sitting still, became WEAK--i am only mildly athletic, but the change was stunning--I couldn't even ride my bike to the local store anymore, couldn't get up one flight of stairs without resting, walked only two or three blocks before my body cried out for a rest (I wouldn't do it, but pushed through--still, it was a bear, a bear. )
I needed a short nap at least every mid-morning, and again every mid-afternoon, and often a third quick nap before actual sleep time. I missed a couple of days of work. I spent at least a couple of the days I WAS at work in such a haze that I did nothing useful and besides, scared some colleagues into thinking I reall was the mumbling idiot that they had always suspected. I always felt physically very uncomfortable, but on two or three occassions it reached the level of painful fevers, shakes, the works.
I went from pretty okay, to a mess. It took only a couple of days. My mood was okay, though, most of the time, considering I was losing most of what I thought of as why we get up in the motning. oh well

We discovered the riba had given me anemia, pretty sudden and deep anemia. procrit was prescribed (oh great! another injection), and things continued to get worse for two, three more weeks, but finally started to lift around two weeks ago--definitely more breath now, less queasiness, dizziness, much less exhaustion. procrit takes from two to six weeks to start to work, then weeks more to get up to speed. so I hope to see more improvement.

Other symprtoms are a mixed bag--the creeping, itchy, dinosaur skin i developed on both arms has been adequately if not perfectly controlled with cortisone. (I had scratched myself bloody, repeatedly, especially on one arm) the diarrhea (whew! this is more debilitating than severe anemia, or can be) is controlled with immodium every couple of days--and it's getting to be more days between doses as the weeks have gone by. Muscle aches just have not recurred after about week four--none at all. fevers ditto.

the nausea, my one absolute worst experience in life, does not go away entirely, (and unfortunately, this is also one of the only important side effects of the procrit which is otherwise a pretty benign drug. so now I have two shots per week that lead to nausea.) I have not found the cure for this one, and also experience the hunger you described. a conumdrum---sick to the stomach but desperate for food. this hunger might be the body trying to fight the anemia.

but the improving trend is noticeable. the headache quite gone, the g. i. tract recoverering from its manic-depressive experiments, the shortness of breath and weakness getting better, even if not nearly so fast nor as dramatically as I desperately want them to do. still, better overall.

I don't have enough hair to begin with to notice loss, but I think I've escaped that one.


so that's my story to date, thanks for asking. Oh! My viral count came back undetectable at four weeks, so this certainly gives me some encouragement. And, if the side effects keep moderating--I just knocked on wood--I can certainly make it through.

thanks a lot for asking.
Peace.

sean


Wow. We also have a child and my enzyme levels and biopsy show progression. Sound like things are getting better for you. I am still scared and my husband went through it too. The baby changes things. We need life insurance. I have not even tried. I did not know you can have a life insurance after 12 months. That is good to know. I thought it was three years. Good luck. It sounds like things are getting better. It is scary. No one wants to do tx. I am starting to feel the hep a little. I think anyway. I feel tired more than usuall and sleep restlessly. Only sometimes do I feel this. It still scares me. I am 30 and have 3e

 
Old 11-06-2006, 05:31 PM   #11
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Re: Hep C - QESTIONS ABOUT HAIR LOSS WITH TREATMENT

Hi Sean,

I completely understand why you decided to do the tx. Babies notwithstanding, I think if my biopsy showed a progression and my liver enzymes were consistently high, I'd do the tx too. In my case, I had biopsies in 2002 and 2005; showed no progression in three years, but the enzymes were running high so I decided to try it. Plus I had a friend doing the tx at the same time so it was helpful to have each other to lean on. But, as you know, the side effects proved too much for me and after 5 weeks, I stopped. I'm so glad to hear you're able to hang in despite the sides. I hope things continue to get better for you.and I'll look forward to hearing how you're doing.

 
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