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Hi Suzy...yes, please let us know..

this is my story. I'm on both enbrel and prednisone. I was having lots

of hair loss. I decided to talk to my pcp and he sent me to a

dermatologist. She said the only thing I was taking that would cause the hair

loss is

the prednisone. I am on a low dose of 5 mgs but have been taking it for

years.

When I asked my rheumy years ago about the prednisone..just to inquire

about it and not about the hair loss, he said the 5 mgs is such a low dose that

it would not be a problem being on it for a length period. This was a

couple of years ago.

Now after talking to the dermatologist, she recommended tapering off the

prednisone because she believes that's causing my hair loss. I called my

rheumy about tapering off and now he tells me that I have been taking it for

too long and that he does not want me tapering off of it. SO...I am between

a rock and a hard place.

My dermatologist said that the enbrel is not the cause for my hair loss but

the prednisone. Se did write me a prescription for APPAREX which is

really 2.5 mgs of bioten that is advertised to strengthen nails but works on

hair. I pay about $16. for that but you can also buy it online....but I've

found bioten 5 mgs at my local groc store for lots less. I've been taking

it since Nov 5th and it has helped my hair a bit.

My dermatologist also suggested eating lots of protein..especially eggs.

Also, carrots and broccoli and eating a healthier diet.

Keep us posted. I will be asking my rheumy when I see him on jan 13th

about weaning off the prednisone.

I also have to ask about a replacement for my darvocet so should be an

informative appt.

Hugs..a

OHIO

In a message dated 1/5/2011 9:21:18 A.M. Eastern Standard Time,

suzyl62@... writes:

I know I should have not stop it but I did, Not know what to do. I will be

calling my Ra dr today to let him know whats going on. I did call the

enbrel hotline last night. she said that she did not think it was from the

enbrel to call dr today. will let you all know what he has to say.

thank you suzyl62

>

> I started enbrel 4 weeks ago and on prednisone 2 aday I stop the

prednison like 2 weeks ago. now I dont know if it was the enbrel or the

prednison

doing it but I am loseing more hair then before. Can anyone help me on this

is anyone loseing there hair on Enbrel. going to ra dr next week and he

told me not to stop the prednison.

> thank you suzanne suzyl62

>

------------------------------------

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of the information provided.

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Hi a.

 

I have been on my Thyroid meds. since I was 10 years old. Very low thyroid, just

miserable.  I have been on my Pred. for 7 years, plus the MTX is a Chemo

drug.    I think all three of these drugs have caused my hair to be so very

fine and thin.  I can't afford to loose one hair!!  I would be in a panic if

my hair started to fall out!!!!  I have my hair cut very short and pray it

never falls out.  Hard enough for me to deal with the weight gain from Pred.

let alone going bald.  OMG, what would I do then?  Never leave my house,  oh

no!!!!!!!!

 

I hope this new year will be a better one for all of us here.  I wish everyone

pain free days and a better RA life.  It is one ugly beast of a disease.

 

Love and hugs to all,

 

Barbara

From: rascalsniche@... <rascalsniche@...>

Subject: Re: [ ] Re: hair lost

Date: Wednesday, January 5, 2011, 10:07 AM

 

Hi Suzy...yes, please let us know..

this is my story. I'm on both enbrel and prednisone. I was having lots

of hair loss. I decided to talk to my pcp and he sent me to a

dermatologist. She said the only thing I was taking that would cause the hair

loss is

the prednisone. I am on a low dose of 5 mgs but have been taking it for

years.

When I asked my rheumy years ago about the prednisone..just to inquire

about it and not about the hair loss, he said the 5 mgs is such a low dose that

it would not be a problem being on it for a length period. This was a

couple of years ago.

Now after talking to the dermatologist, she recommended tapering off the

prednisone because she believes that's causing my hair loss. I called my

rheumy about tapering off and now he tells me that I have been taking it for

too long and that he does not want me tapering off of it. SO...I am between

a rock and a hard place.

My dermatologist said that the enbrel is not the cause for my hair loss but

the prednisone. Se did write me a prescription for APPAREX which is

really 2.5 mgs of bioten that is advertised to strengthen nails but works on

hair. I pay about $16. for that but you can also buy it online....but I've

found bioten 5 mgs at my local groc store for lots less. I've been taking

it since Nov 5th and it has helped my hair a bit.

My dermatologist also suggested eating lots of protein..especially eggs.

Also, carrots and broccoli and eating a healthier diet.

Keep us posted. I will be asking my rheumy when I see him on jan 13th

about weaning off the prednisone.

I also have to ask about a replacement for my darvocet so should be an

informative appt.

Hugs..a

OHIO

In a message dated 1/5/2011 9:21:18 A.M. Eastern Standard Time,

suzyl62@... writes:

I know I should have not stop it but I did, Not know what to do. I will be

calling my Ra dr today to let him know whats going on. I did call the

enbrel hotline last night. she said that she did not think it was from the

enbrel to call dr today. will let you all know what he has to say.

thank you suzyl62

>

> I started enbrel 4 weeks ago and on prednisone 2 aday I stop the

prednison like 2 weeks ago. now I dont know if it was the enbrel or the

prednison

doing it but I am loseing more hair then before. Can anyone help me on this

is anyone loseing there hair on Enbrel. going to ra dr next week and he

told me not to stop the prednison.

> thank you suzanne suzyl62

>

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Hi Barb..yes that's another thing..some of the meds we take are a chemo

drug. I would have to look for a wig in a year. they have cute wigs out

but my head is small and I am used to my wispy baby fine hair so any wig

that has hair on it makes me feel that I look like a throwback to farrah

fawcett. So much hair, so little face. haha

Thanks Barb.....I hope that 2011 is a good one for you.....you deserve it!

Hugs..a

In a message dated 1/5/2011 11:50:10 A.M. Eastern Standard Time,

bcreedon@... writes:

Hi a.

I have been on my Thyroid meds. since I was 10 years old. Very low

thyroid, just miserable. I have been on my Pred. for 7 years, plus the MTX is

a

Chemo drug. I think all three of these drugs have caused my hair to be so

very fine and thin. I can't afford to loose one hair!! I would be in a

panic if my hair started to fall out!!!! I have my hair cut very short and

pray it never falls out. Hard enough for me to deal with the weight gain

from Pred. let alone going bald. OMG, what would I do then? Never leave my

house, oh no!!!!!!!!

I hope this new year will be a better one for all of us here. I wish

everyone pain free days and a better RA life. It is one ugly beast of a

disease.

Love and hugs to all,

Barbara

From: rascalsniche@... <rascalsniche@...>

Subject: Re: [ ] Re: hair lost

Date: Wednesday, January 5, 2011, 10:07 AM

Hi Suzy...yes, please let us know..

this is my story. I'm on both enbrel and prednisone. I was having lots

of hair loss. I decided to talk to my pcp and he sent me to a

dermatologist. She said the only thing I was taking that would cause the

hair loss is

the prednisone. I am on a low dose of 5 mgs but have been taking it for

years.

When I asked my rheumy years ago about the prednisone..just to inquire

about it and not about the hair loss, he said the 5 mgs is such a low dose

that

it would not be a problem being on it for a length period. This was a

couple of years ago.

Now after talking to the dermatologist, she recommended tapering off the

prednisone because she believes that's causing my hair loss. I called my

rheumy about tapering off and now he tells me that I have been taking it

for

too long and that he does not want me tapering off of it. SO...I am

between

a rock and a hard place.

My dermatologist said that the enbrel is not the cause for my hair loss

but

the prednisone. Se did write me a prescription for APPAREX which is

really 2.5 mgs of bioten that is advertised to strengthen nails but works

on

hair. I pay about $16. for that but you can also buy it online....but I've

found bioten 5 mgs at my local groc store for lots less. I've been taking

it since Nov 5th and it has helped my hair a bit.

My dermatologist also suggested eating lots of protein..especially eggs.

Also, carrots and broccoli and eating a healthier diet.

Keep us posted. I will be asking my rheumy when I see him on jan 13th

about weaning off the prednisone.

I also have to ask about a replacement for my darvocet so should be an

informative appt.

Hugs..a

OHIO

In a message dated 1/5/2011 9:21:18 A.M. Eastern Standard Time,

suzyl62@... writes:

I know I should have not stop it but I did, Not know what to do. I will be

calling my Ra dr today to let him know whats going on. I did call the

enbrel hotline last night. she said that she did not think it was from the

enbrel to call dr today. will let you all know what he has to say.

thank you suzyl62

>

> I started enbrel 4 weeks ago and on prednisone 2 aday I stop the

prednison like 2 weeks ago. now I dont know if it was the enbrel or the

prednison

doing it but I am loseing more hair then before. Can anyone help me on

this

is anyone loseing there hair on Enbrel. going to ra dr next week and he

told me not to stop the prednison.

> thank you suzanne suzyl62

>

------------------------------------

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nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

For archives or to change subscription options:

! Groups Links

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

------------------------------------

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nonsubscribers, you must first obtain the writer's permission.

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as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

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Ok I been on phone all morning and with my Dr's . this is what I have been told.

it seems it is the prednisone I take 5 mg 2 times a day. this is what I was told

to do---------- take folic acid 1 every day--take vitamin D 2000 a day womans

one a day vitamin every day with all 3 will work on my immune health and help my

hair. So I will keep you all updated on it. is everyone taking all the vitamin

and folic acid.

thank you suzyl62

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Suzy..I am taking the folic acid once a day 1 mg... but don't take vitamin

D..but do take an everyday vitamin.

thanks for that info..will look into getting some Vit D.

a

In a message dated 1/5/2011 3:11:34 P.M. Eastern Standard Time,

suzyl62@... writes:

Ok I been on phone all morning and with my Dr's . this is what I have been

told. it seems it is the prednisone I take 5 mg 2 times a day. this is

what I was told to do---------- take folic acid 1 every day--take vitamin D

2000 a day womans one a day vitamin every day with all 3 will work on my

immune health and help my hair. So I will keep you all updated on it. is

everyone taking all the vitamin and folic acid.

thank you suzyl62

[Non-text portions of this message have been removed]

------------------------------------

This is a private list. Should you wish to forward any mail to

nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

For archives or to change subscription options:

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Hi Gang,

For 11 years I haveI taken 1 folic acid twice a day, morning and night. For

the past year I have taken the prescription Vit D once a week. I'm on mtx 2

pills a week and I have major hair loss. I only do pred when I have a MAJOR

flare and then only for a short period of time. I also do a daily multi and

calcium vitamin. I have added biotin to the list in the last month. I

really hate the hair loss (it's just so thin on top) but unless the biotin

does wonders, what can I do.

in PA

On Wed, Jan 5, 2011 at 3:26 PM, <rascalsniche@...> wrote:

>

>

> Suzy..I am taking the folic acid once a day 1 mg... but don't take vitamin

> D..but do take an everyday vitamin.

>

> thanks for that info..will look into getting some Vit D.

>

> a

>

>

> In a message dated 1/5/2011 3:11:34 P.M. Eastern Standard Time,

> suzyl62@... <suzyl62%40> writes:

>

> Ok I been on phone all morning and with my Dr's . this is what I have been

> told. it seems it is the prednisone I take 5 mg 2 times a day. this is

> what I was told to do---------- take folic acid 1 every day--take vitamin D

>

> 2000 a day womans one a day vitamin every day with all 3 will work on my

> immune health and help my hair. So I will keep you all updated on it. is

> everyone taking all the vitamin and folic acid.

> thank you suzyl62

>

>

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In a message dated 1/5/2011 2:11:32 P.M. Central Standard Time,

suzyl62@... writes:

Ok I been on phone all morning and with my Dr's . this is what I have been

told. it seems it is the prednisone I take 5 mg 2 times a day. this is

what I was told to do---------- take folic acid 1 every day--take vitamin D

2000 a day womans one a day vitamin every day with all 3 will work on my

immune health and help my hair. So I will keep you all updated on it. is

everyone taking all the vitamin and folic acid. >

I've been on Prednisone since I was diagnosed -- two or three years ago.

When I was on Methotrexate, I took Folic Acid. I think 2 mg a day, except the

day I took the Mtx. Hair loss was not too bad. Then I tried Arava and hair

got really weird and fell out.

Then I switched to Remicade. A few months ago, I noticed my hair falling

out again though there was no change in drugs. On a whim, I started taking 1

mg of Folic Acid again, even though I've never heard of it helping except

when you're on Mtx. The hair loss stopped and my beautician says my hair is

back to normal.

Normal is thin and fine. Especially fine.

dd

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Hi a.

 

I know what you mean, plus a wig would make my head so hot I could not stand

it.  Like having hot flashes in your whole head.......awful!!!  I can take

wipty, not hot!!!  What a mess to be in for us with thin, fine hair. 

Yikes!!!

 

I wish the same for you too a.  I was glad to see the last 2 years be gone,

and a nice new year to start.  Gives us hope!!!

 

Take care of yourself.

 

Hugs,

 

Barbara

From: rascalsniche@... <rascalsniche@...>

Subject: Re: [ ] Re: hair lost

Date: Wednesday, January 5, 2011, 10:07 AM

Hi Suzy...yes, please let us know..

this is my story. I'm on both enbrel and prednisone. I was having lots

of hair loss. I decided to talk to my pcp and he sent me to a

dermatologist. She said the only thing I was taking that would cause the

hair loss is

the prednisone. I am on a low dose of 5 mgs but have been taking it for

years.

When I asked my rheumy years ago about the prednisone..just to inquire

about it and not about the hair loss, he said the 5 mgs is such a low dose

that

it would not be a problem being on it for a length period. This was a

couple of years ago.

Now after talking to the dermatologist, she recommended tapering off the

prednisone because she believes that's causing my hair loss. I called my

rheumy about tapering off and now he tells me that I have been taking it

for

too long and that he does not want me tapering off of it. SO...I am

between

a rock and a hard place.

My dermatologist said that the enbrel is not the cause for my hair loss

but

the prednisone. Se did write me a prescription for APPAREX which is

really 2.5 mgs of bioten that is advertised to strengthen nails but works

on

hair. I pay about $16. for that but you can also buy it online....but I've

found bioten 5 mgs at my local groc store for lots less. I've been taking

it since Nov 5th and it has helped my hair a bit.

My dermatologist also suggested eating lots of protein..especially eggs.

Also, carrots and broccoli and eating a healthier diet.

Keep us posted. I will be asking my rheumy when I see him on jan 13th

about weaning off the prednisone.

I also have to ask about a replacement for my darvocet so should be an

informative appt.

Hugs..a

OHIO

In a message dated 1/5/2011 9:21:18 A.M. Eastern Standard Time,

suzyl62@... writes:

I know I should have not stop it but I did, Not know what to do. I will be

calling my Ra dr today to let him know whats going on. I did call the

enbrel hotline last night. she said that she did not think it was from the

enbrel to call dr today. will let you all know what he has to say.

thank you suzyl62

>

> I started enbrel 4 weeks ago and on prednisone 2 aday I stop the

prednison like 2 weeks ago. now I dont know if it was the enbrel or the

prednison

doing it but I am loseing more hair then before. Can anyone help me on

this

is anyone loseing there hair on Enbrel. going to ra dr next week and he

told me not to stop the prednison.

> thank you suzanne suzyl62

>

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I have fine, thin hair as well. Thank goodness somebody invented mousse!

Sue

On Jan 5, 2011, at 7:35 PM, Barbara Creedon wrote:

>

> I know what you mean, plus a wig would make my head so hot I could

> not stand it. Like having hot flashes in your whole

> head.......awful!!! I can take wipty, not hot!!! What a mess to be

> in for us with thin, fine hair. Yikes!!!

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I don't see why your rheumy doesn't want you to even try weaning off

of the prednisone. You could try doing it very slowly. That 5mg is

such a low dose that it shouldn't be impossible to wean off. I would

bring it up again and ask him why he advises against it.

Sue

On Jan 5, 2011, at 10:07 AM, rascalsniche@... wrote:

>

> Now after talking to the dermatologist, she recommended tapering off

> the

> prednisone because she believes that's causing my hair loss. I

> called my

> rheumy about tapering off and now he tells me that I have been

> taking it for

> too long and that he does not want me tapering off of it. SO...I

> am between

> a rock and a hard place.

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I don't either Sue unless its because I am only taking enbrel and he wants

me on something else..or its just because I am doing so well that he hates

to mess with me. he said I am a challenge at times.I am going to mention

it again next week when I go in. a

In a message dated 1/5/2011 11:11:08 P.M. Eastern Standard Time,

marysue@... writes:

I don't see why your rheumy doesn't want you to even try weaning off

of the prednisone. You could try doing it very slowly. That 5mg is

such a low dose that it shouldn't be impossible to wean off. I would

bring it up again and ask him why he advises against it.

Sue

On Jan 5, 2011, at 10:07 AM, rascalsniche@... wrote:

>

> Now after talking to the dermatologist, she recommended tapering off

> the

> prednisone because she believes that's causing my hair loss. I

> called my

> rheumy about tapering off and now he tells me that I have been

> taking it for

> too long and that he does not want me tapering off of it. SO...I

> am between

> a rock and a hard place.

------------------------------------

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nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

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I don't even think mousse would help me but what brand do you use? I have

even tried the dry shampoo so I wouldn't have to wash it so much..a

In a message dated 1/5/2011 7:54:12 P.M. Eastern Standard Time,

marysue@... writes:

I have fine, thin hair as well. Thank goodness somebody invented mousse!

Sue

On Jan 5, 2011, at 7:35 PM, Barbara Creedon wrote:

>

> I know what you mean, plus a wig would make my head so hot I could

> not stand it. Like having hot flashes in your whole

> head.......awful!!! I can take wipty, not hot!!! What a mess to be

> in for us with thin, fine hair. Yikes!!!

------------------------------------

This is a private list. Should you wish to forward any mail to

nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

For archives or to change subscription options:

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Share on other sites

I just get a cheap kind that I find at Walmart. The kind I have now is

Perm Essential. One container last me a long time, because I have very

short hair, and I put the mousse just on the hair on top of my head.

It does help keep it from just lying down completely flat.

Sue

On Jan 6, 2011, at 8:31 AM, rascalsniche@... wrote:

> I don't even think mousse would help me but what brand do you use?

> I have

> even tried the dry shampoo so I wouldn't have to wash it so

> much..a

>

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Thank you Sue! Glad it works for you. I am close to looking at wigs

....but with such fine hair, all wigs look like I have too much hair....I'm not

used to it.

I wish I could find a wig that it not chock full of hair and looks thinner

then so thick.

a

In a message dated 1/6/2011 1:16:51 P.M. Eastern Standard Time,

marysue@... writes:

I just get a cheap kind that I find at Walmart. The kind I have now is

Perm Essential. One container last me a long time, because I have very

short hair, and I put the mousse just on the hair on top of my head.

It does help keep it from just lying down completely flat.

Sue

On Jan 6, 2011, at 8:31 AM, rascalsniche@... wrote:

> I don't even think mousse would help me but what brand do you use?

> I have

> even tried the dry shampoo so I wouldn't have to wash it so

> much..a

>

------------------------------------

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nonsubscribers, you must first obtain the writer's permission.

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as medical advice, and we cannot guarantee the accuracy and currency

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Good one, Jane!

Sue

On Jan 6, 2011, at 3:59 PM, jane wrote:

> i have a ton of hair, but judging from my shower drain,i'm losing it

> every day thanks to all the meds. i wear it super short, but some

> days my hair needs mousse AND squirrel! (Bullwinkle joke for us

> older folks.....)

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Hahahaha thanks for the Bullwinkle joke...lol

a

In a message dated 1/6/2011 4:00:11 P.M. Eastern Standard Time,

janeatregis@... writes:

i have a ton of hair, but judging from my shower drain,i'm losing it every

day thanks to all the meds. i wear it super short, but some days my hair

needs mousse AND squirrel! (Bullwinkle joke for us older folks.....)

> >

> > I know what you mean, plus a wig would make my head so hot I could

> > not stand it. Like having hot flashes in your whole

> > head.......awful!!! I can take wipty, not hot!!! What a mess to be

> > in for us with thin, fine hair. Yikes!!!

>

------------------------------------

This is a private list. Should you wish to forward any mail to

nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

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Hi ...my derma suggested the bioten also. I got the 5 mg capsules. I

used to use the smaller dosage (mcgs) and that did nothing. My hair is so

thin in the back. its not showing scalp but its really close. Its hard

to believe. a

In a message dated 1/5/2011 3:52:56 P.M. Eastern Standard Time,

mhm423@... writes:

Hi Gang,

For 11 years I haveI taken 1 folic acid twice a day, morning and night.

For

the past year I have taken the prescription Vit D once a week. I'm on mtx

2

pills a week and I have major hair loss. I only do pred when I have a

MAJOR

flare and then only for a short period of time. I also do a daily multi

and

calcium vitamin. I have added biotin to the list in the last month. I

really hate the hair loss (it's just so thin on top) but unless the biotin

does wonders, what can I do.

in PA

On Wed, Jan 5, 2011 at 3:26 PM, <rascalsniche@...> wrote:

>

>

> Suzy..I am taking the folic acid once a day 1 mg... but don't take

vitamin

> D..but do take an everyday vitamin.

>

> thanks for that info..will look into getting some Vit D.

>

> a

>

>

> In a message dated 1/5/2011 3:11:34 P.M. Eastern Standard Time,

> suzyl62@... <suzyl62%40> writes:

>

> Ok I been on phone all morning and with my Dr's . this is what I have

been

> told. it seems it is the prednisone I take 5 mg 2 times a day. this is

> what I was told to do---------- take folic acid 1 every day--take

vitamin D

>

> 2000 a day womans one a day vitamin every day with all 3 will work on my

> immune health and help my hair. So I will keep you all updated on it. is

> everyone taking all the vitamin and folic acid.

> thank you suzyl62

>

> [Non-text portions of this message have been removed]

>

> ------------------------------------

>

>

> This is a private list. Should you wish to forward any mail to

> nonsubscribers, you must first obtain the writer's permission.

>

> We are NOT physicians. Information on this list is not to be construed

> as medical advice, and we cannot guarantee the accuracy and currency

> of the information provided.

>

> For archives or to change subscription options:

> ! Groups Links

>

>

> [Non-text portions of this message have been removed]

>

>

>

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Thanks Sue, I may try that....I need a lift!!!!!!

 

Hugs,

 

Barbara

> I don't even think mousse would help me but what brand do you use?

> I have

> even tried the dry shampoo so I wouldn't have to wash it so

> much..a

>

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He said the enbrel caused the hair loss? My dermatologist told me my hair

loss was because of the prednisone. It's probably BOTH!!

Good luck with the remade Suzy..let us know if it grows back.

I know my rheumy wouldn't want me off the enbrel since I'm doing so well.

I don't want to go off of it either...

Hugs..a

In a message dated 1/10/2011 6:38:23 P.M. Eastern Standard Time,

suzyl62@... writes:

Ok went to Ra Dr today, He took me off the enbrel because of the Hair

lost. So now he said lets put in for Remicade IV We will see if Inc will cover

it .

suzyl62

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Hope you can get approved with the ins for Remicade.  I also hope it works

great for you.  Good luck.

 

Hugs,

 

Barbara

From: suzanne lieberman <suzyl62@...>

Subject: Re: [ ] Re: hair lost

Date: Monday, January 10, 2011, 4:05 PM

 

Ok went to Ra Dr today, He took me off the enbrel because of the Hair lost. So

now he said lets put in for Remicade IV We will see if Inc will cover it . 

suzyl62

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