RE: RE: RE: hi

[Guest guest]

>I am Hannah's mom and think that it depends on each individual person and how

it affects them. I have been very supportive of Hannah telling her that she is

beautiful very often and that she is a very caring individual. She would never

dream of hurting another person. I think Hannah might feel that boys don't like

her because of her eyes. Alot of older people think she is a wonderful child

when they meet her. She volunteers at the veteran's home in our town and they

all love her there. But there no one is judging how she looks. People are

right saying that kids will pick on anyone who is different, no matter what

their differences are. I have worked with the school principal with Hannah

being picked on and I don't think it happens as frequently as it did. I know

that Hannah will grow up and be happy in her life but being a teen is very hard

for her. We are so glad we found this group because I think for her it lets her

know that there are other people who look like her and she isn't alone.

Sincerely on NH

From: miss <ssimtenaj@...>

>Date: 2007/05/16 Wed PM 09:17:46 CDT

>blepharophimosis

>Subject: Re: blepharophimosis Re: hi

>

>I have a 16 year old son that was born with severe bpes. He is a

very bright, caring and handsome young man. Throughout his life he has had to

explain his differences to different people. Within moments it is not an issue.

He only gives a very brief explanation. That is sufficient for most. My son is a

high honor student. In grade school he received the academic presidential award.

He has played baseball, basketball and football. He is very popular and well

liked by both children and adults. I do believe there are some days that he does

not even think about bpes. A positive attitude and high self esteem is very

important. I continually gave this child positive reinforcement about his looks

as well as his mind. I can't stress enough how important this is.He did go

through 3 surgeries at Mass Eye in Boston.  I am a single Mom and have a son

that is 18 months younger that does not have bpes.   Janet in NH

>

>Mike and Nicki Venable <nicki.venable@...> wrote: Hannah,

>

>I do not have bpes, however my 10month old daughter does. She had temp

>slings put in at 3 months. She did have another surgery in January due

>to infected tissue and the surgery went well. Her appearance is great

>and most people just think that she looks Asian. I don't notice her

>being different, but that may be because I am her mother and love her.

>I would love to know (if it not to hard to talk about) how bpes is

>difficult for those who have it. This would be helpful for me as my

>daughter gets older. I want to be understanding and supportive and not

>think she is over reacting. Please help me to understand so that I can

>educate my family and others around her prior to her being of age to be

>affected emotionally. Any help would be appreciated!

>

>Nicki

>

>--- In blepharophimosis , " h.jameson " <h.jameson@...>

>wrote:

>>

>> hi my name is hannah i am 13 but i feel like my life has change

>because

>> of this bpes. so i thought that if people in ny, mass, ri, me could

>> meet maybe it would make my life a lot easyer. even if it is just one

>> person from one of those states. Or some other state that is close to

>> or close new hamsphire. sometime i wish people in my school would

>under

>> stand what is like to live with bpes, sometimes i could just cry that

>> is how hard this hits me.

>> can you please wright back

>> from a group member

>> Hannah j,13

>>

>

>

>

> Expecting? Get great news right away with email Auto-Check.

>Try the Beta.

[Guest guest]

Jo Nell, I am not medically trained but I

do read message boards a lot. From what I read Humira and Enbrel are

generally similar with respect to infections. I have not read as much

about infections with Remicade but it works on the same principle as Humira and

Enbrel but all three of them work in different ways. Each of them acts to

weaken some component or components of the immune system in hopes of stopping

the part of the immune system that is attacking our joints. Sometimes

they weaken a portion of the immune system that protects us from various

infections and that can lead to trouble. Unfortunately the immune system

is so complex that we can’t be sure which components are being weakened

and what is needed to protect us from the infections that are common to

us. The other biologics like Orencia, Rituxan, and Kineret work in

entirely different ways but each targets some component of the immune system so

there is a risk that they will weaken a portion that is important to us. Unfortunately,

our bodies are the only ones that can tell us what will and will not work for

us.

Another treatment that has much popular

appeal but little enthusiasm among most rheumatologists is antibiotic therapy

using derivatives of Tetracycline. I’ve never tried it myself

because a combination of Methotrexate and Remicade works well for me. The

most commonly used antibiotic is Minocycline, and that is a relatively

inexpensive drug used for acne and many other conditions. Therefore much

is known about tolerance and side effects. There is no patent position on

this drug because it has been established for so long so the drug companies

have no incentive to spend the large amount needed for clinical trials to

satisfy the medical community. However, there have been a number of small

clinical trials that are usually run on a shoestring because nobody wants to

fund them. (I think it would be to the insurance company’s benefit

to fund these clinical trials and reduce the cost of treating RA, but that’s

just my opinion.) Anyway there is a website called roadback foundation

http://www.roadback.org/

This is devoted to antibiotic therapy and

contains a lot of anecdotal information together with references to scientific

studies. I tend to discount (but not totally ignore) anecdotal data

because often the authors have some economic interest in selling a

product. It’s kind of hard to find the scientific studies but a few

of them do exist and they are all favorable for antibiotic therapy, even when

other treatments have failed. Most rheumatologists and most of the

literature only deals with the two early clinical trials in which all

participants had early onset, mild RA. Because of this many people say

that antibiotic therapy is only good for early onset, mild RA. Later

studies that show it is also effective for well-established, aggressive RA are

more obscure and most rheumatologists don’t dig deeply enough to be aware

of them. If you want more information about this I might be able to help

you and I would be happy to try.

I’m sorry that you are having so

much trouble finding an acceptable treatment for your RA. I hope you soon

find your magic treatment. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Jo

Sent: Sunday, May 18, 2008 6:51 PM

Rheumatoid Arthritis

Subject: RE: RE:

hi

Does any

one know about Humira. I started on Enbrel about 16 months

ago. I started having too many infections and it was making my neuropathy

worse. I went to Arava and the side effects were too bad. Now I am

on Humira along with plaquinel. The Enbrel worked really good. I

hope the Humira is as good. If anyone knows about Humira, please let me

know. Thanks Jo Nell

Harold Van Tuyl <hvantuylcharter (DOT) net> wrote:

I hope you are successful with the

treatments you are using. They seem to be effective for some people with

RA but not for others. I think it is important to be examined by a

board-certified rheumatologist to look for signs of joint damage. I would

not be surprised if you already have some joint damage because of lack of

aggressive treatment, and the damage is getting worse all the time. While

the damage that has already occurred cannot be reversed, it is possible to slow

or stop continued joint damage. I am not aware of medically approved

tests (clinical trials) that show what you are taking will slow of stop joint

damage. I urge you to see a rheumatologist for at least a baseline

examination. God bless.

[Guest guest]

Jo Nell, I took Humira for 2 1/2 years or so and it really helped me alot...... but the one shot every two weeks didnt work we had to get it up to once a week. I never got sick or had any problems with Humira. Hope it works for you, but I also took mtx with it. Take care , ReniHarold Van Tuyl <hvantuyl@...> wrote: Jo Nell, I am not medically trained but I do read message boards a lot. From what I read Humira and Enbrel are generally similar with respect to infections. I have not read as much about infections with Remicade but it works on the same principle as Humira and Enbrel but all three of them work in different ways. Each of them acts to weaken some component or components of the immune system in hopes of stopping the part of the immune system that is attacking our joints. Sometimes they weaken a portion of the immune system that protects us from various infections and that can lead to trouble. Unfortunately the immune system is so complex that we can’t be sure which components are being weakened and what is needed to protect us from the infections that are common to us. The other biologics like Orencia, Rituxan, and Kineret work in entirely different ways but each targets some component of the immune

system so there is a risk that they will weaken a portion that is important to us. Unfortunately, our bodies are the only ones that can tell us what will and will not work for us. Another treatment that has much popular appeal but little enthusiasm among most rheumatologists is antibiotic therapy using derivatives of Tetracycline. I’ve never tried it myself because a combination of Methotrexate and Remicade works well for me. The most commonly used antibiotic is Minocycline, and that is a relatively inexpensive drug used for acne and many other conditions. Therefore much is known about tolerance and side effects. There is no patent position on

this drug because it has been established for so long so the drug companies have no incentive to spend the large amount needed for clinical trials to satisfy the medical community. However, there have been a number of small clinical trials that are usually run on a shoestring because nobody wants to fund them. (I think it would be to the insurance company’s benefit to fund these clinical trials and reduce the cost of treating RA, but that’s just my opinion.) Anyway there is a website called roadback foundation http://www.roadback.org/ This is devoted to antibiotic therapy and contains a lot of anecdotal information

together with references to scientific studies. I tend to discount (but not totally ignore) anecdotal data because often the authors have some economic interest in selling a product. It’s kind of hard to find the scientific studies but a few of them do exist and they are all favorable for antibiotic therapy, even when other treatments have failed. Most rheumatologists and most of the literature only deals with the two early clinical trials in which all participants had early onset, mild RA. Because of this many people say that antibiotic therapy is only good for early onset, mild RA. Later studies that show it is also effective for well-established, aggressive RA are more obscure and most rheumatologists don’t dig deeply enough to be aware of them. If you want more information about this I might be able to help you and I would be happy to try. I’m sorry that you are having so much trouble finding an acceptable treatment for your RA. I hope you soon find your magic treatment. God bless. From:

Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Jo Sent: Sunday, May 18, 2008 6:51 PMRheumatoid Arthritis Subject: RE: RE: hi Does any one know about Humira. I started on Enbrel about 16 months ago. I started having too many infections and it was making my neuropathy worse. I went to Arava and the side effects were too

bad. Now I am on Humira along with plaquinel. The Enbrel worked really good. I hope the Humira is as good. If anyone knows about Humira, please let me know. Thanks Jo NellHarold Van Tuyl <hvantuylcharter (DOT) net> wrote: I hope you are successful with the treatments you are using. They seem to be effective for some people with RA but not for others. I think it is important to be examined by a board-certified rheumatologist to look for signs of joint damage. I would not be surprised if you already have some joint damage because of lack of aggressive treatment, and the damage is getting

worse all the time. While the damage that has already occurred cannot be reversed, it is possible to slow or stop continued joint damage. I am not aware of medically approved tests (clinical trials) that show what you are taking will slow of stop joint damage. I urge you to see a rheumatologist for at least a baseline examination. God bless.

[Guest guest]

Thanks Reni, I will talk to my Rumy about it. I now take plaquinel with Humera. Do you remember how long it took to start working. Arava that the doctor put me on took 6 months or longer. 16 months ago when I was diagnosed, my RA factor was 2167.00. Now it is 1410. what does this tell me about my condition. I don't much about RA. Thank you, Jo NellReni <psalms107_20@...> wrote: Jo Nell, I took Humira for 2 1/2 years or so and it really helped me

alot...... but the one shot every two weeks didnt work we had to get it up to once a week. I never got sick or had any problems with Humira. Hope it works for you, but I also took mtx with it. Take care , ReniHarold Van Tuyl <hvantuylcharter (DOT) net> wrote: Jo Nell, I am not medically trained but I do read message boards a lot. From what I read Humira and Enbrel are generally similar with respect to infections. I have not read as much about infections with Remicade but it works on the same principle as Humira and Enbrel but all three of them work in different ways. Each of them acts to weaken some component or

components of the immune system in hopes of stopping the part of the immune system that is attacking our joints. Sometimes they weaken a portion of the immune system that protects us from various infections and that can lead to trouble. Unfortunately the immune system is so complex that we can’t be sure which components are being weakened and what is needed to protect us from the infections that are common to us. The other biologics like Orencia, Rituxan, and Kineret work in entirely different ways but each targets some component of the immune system so there is a risk that they will weaken a portion that is important to us. Unfortunately, our bodies are the only ones that can tell us what will and will not work for us. Another treatment that has much popular appeal but little enthusiasm among most rheumatologists is antibiotic therapy using derivatives of Tetracycline. I’ve never tried it myself because a combination of Methotrexate and Remicade works well for me. The most commonly used antibiotic is Minocycline, and that is a relatively inexpensive drug used for acne and many other conditions. Therefore much is known about tolerance and side effects. There is no patent position on this drug because it has been established for so long so the drug companies have no incentive to spend the large amount needed for clinical trials to satisfy the medical community. However, there have been a number of small clinical trials that are usually run on a shoestring because nobody wants to fund them. (I think it would be to the insurance company’s benefit to fund these clinical trials and reduce

the cost of treating RA, but that’s just my opinion.) Anyway there is a website called roadback foundation http://www.roadback.org/ This is devoted to antibiotic therapy and contains a lot of anecdotal information together with references to scientific studies. I tend to discount (but not totally ignore) anecdotal data because often the authors have some economic interest in selling a product. It’s kind of hard to find the scientific studies but a few of them do exist and they are all favorable for antibiotic therapy, even when other treatments have failed. Most rheumatologists and most of the literature only deals

with the two early clinical trials in which all participants had early onset, mild RA. Because of this many people say that antibiotic therapy is only good for early onset, mild RA. Later studies that show it is also effective for well-established, aggressive RA are more obscure and most rheumatologists don’t dig deeply enough to be aware of them. If you want more information about this I might be able to help you and I would be happy to try. I’m sorry that you are having so much trouble finding an acceptable treatment for your RA. I hope you soon find your magic treatment. God bless. From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Jo Sent: Sunday, May 18, 2008 6:51 PMRheumatoid Arthritis Subject:

RE: RE: hi Does any one know about Humira. I started on Enbrel about 16 months ago. I started having too many infections and it was making my neuropathy worse. I went to Arava and the side effects were too bad. Now I am on Humira along with plaquinel. The Enbrel worked really good. I hope the Humira is as good. If anyone knows about Humira, please let me know. Thanks Jo NellHarold Van Tuyl <hvantuylcharter (DOT) net> wrote: I hope you are successful with the treatments you are using. They seem to be effective for some people with RA but not for others. I think it is important to be examined by a board-certified rheumatologist to look for signs of joint damage. I would not be surprised if you already have some joint damage because of lack of aggressive treatment, and the damage is getting worse all the time. While the damage that has already occurred cannot be reversed, it is possible to slow or stop continued joint damage. I am not aware of medically approved tests (clinical trials) that show what you are taking will slow of stop joint damage. I urge you to see a rheumatologist for at least a baseline examination. God bless.

[Guest guest]

JoNell, it tookme about 4months before it helped alot, but that was because i went 1month on every 2 weeks, then i went the 1 month every ten days then finally we got it up to 1 time a week and by the end of that month i was doing really good for me. As far as the testing and such you need to ask your doc what normal is and then find out where u r and all. the only thing i did want to tell u though is i now take enbrel and the humira stings alot compared to the enbrel shot. But they do have the click pens to use for ur shots like the enbrel so that is good.when i was taking humira they didnt have the pens so hubby was doing my shots and i used to get kind sqirming cuz of the buring which actually then made it worse. Hope it works real well for u! love & prayers, ReniJo <dearhunterbebe@...> wrote: Thanks Reni, I will talk to my Rumy about it. I now take plaquinel with Humera. Do you remember how long it took to start working. Arava that the doctor put me on took 6 months or longer. 16 months ago when I was diagnosed, my RA factor was 2167.00. Now it is 1410. what does this tell me about my condition. I don't much about RA. Thank you, Jo NellReni <psalms107_20 > wrote: Jo Nell, I took Humira for 2 1/2 years or so and it really helped me alot...... but the one shot every two weeks didnt work we had to get it up to once a week. I never got sick or had any problems with Humira. Hope it works for you, but I also took mtx with it. Take care , ReniHarold Van Tuyl <hvantuylcharter (DOT) net> wrote: Jo Nell, I am not medically trained but I do read message boards a lot. From what I read Humira and Enbrel are generally similar with respect to infections. I have not read as

much about infections with Remicade but it works on the same principle as Humira and Enbrel but all three of them work in different ways. Each of them acts to weaken some component or components of the immune system in hopes of stopping the part of the immune system that is attacking our joints. Sometimes they weaken a portion of the immune system that protects us from various infections and that can lead to trouble. Unfortunately the immune system is so complex that we can’t be sure which components are being weakened and what is needed to protect us from the infections that are common to us. The other biologics like Orencia, Rituxan, and Kineret work in entirely different ways but each targets some component of the immune system so there is a risk that they will weaken a portion that is important to us. Unfortunately, our bodies are the only ones that can tell us what will and will not work for us. Another treatment that has much popular appeal but little enthusiasm among most rheumatologists is antibiotic therapy using derivatives of Tetracycline. I’ve never tried it myself because a combination of Methotrexate and Remicade works well for me. The most commonly used antibiotic is Minocycline, and that is a relatively inexpensive drug used for acne and many other conditions. Therefore much is known about tolerance and side effects. There is no patent position on this drug because it has been established for so long so the drug companies have no incentive to spend the large amount needed for clinical trials to satisfy the medical community. However, there have been a number of small

clinical trials that are usually run on a shoestring because nobody wants to fund them. (I think it would be to the insurance company’s benefit to fund these clinical trials and reduce the cost of treating RA, but that’s just my opinion.) Anyway there is a website called roadback foundation http://www.roadback.org/ This is devoted to antibiotic therapy and contains a lot of anecdotal information together with references to scientific studies. I tend to discount (but not totally ignore) anecdotal data because often the authors have some economic interest in selling a product. It’s kind of hard to find the scientific

studies but a few of them do exist and they are all favorable for antibiotic therapy, even when other treatments have failed. Most rheumatologists and most of the literature only deals with the two early clinical trials in which all participants had early onset, mild RA. Because of this many people say that antibiotic therapy is only good for early onset, mild RA. Later studies that show it is also effective for well-established, aggressive RA are more obscure and most rheumatologists don’t dig deeply enough to be aware of them. If you want more information about this I might be able to help you and I would be happy to try. I’m sorry that you are having so

much trouble finding an acceptable treatment for your RA. I hope you soon find your magic treatment. God bless. From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Jo Sent: Sunday,

May 18, 2008 6:51 PMRheumatoid Arthritis Subject: RE: RE: hi Does any one know about Humira. I started on Enbrel about 16 months ago. I started having too many infections and it was making my neuropathy worse. I went to Arava and the side effects were too bad. Now I am on Humira along with plaquinel. The Enbrel worked really good. I hope the Humira is as good. If anyone knows about Humira, please let me know. Thanks Jo NellHarold Van Tuyl <hvantuylcharter (DOT) net> wrote: I hope you are successful with the treatments you are using. They seem to be effective for some people with RA but not for others. I think it is important to be examined by a board-certified rheumatologist to look for signs of joint damage. I would not be surprised if you already have some joint damage because of lack of aggressive treatment, and the damage is getting worse all the time. While the damage that has already occurred cannot be reversed, it is possible to slow or stop continued joint damage. I am not aware of medically approved tests (clinical trials) that show what you are taking will slow of stop

joint damage. I urge you to see a rheumatologist for at least a baseline examination. God bless.