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Re: My Daughter Has PA

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Could it be Methotrexate they're talking about? I've been on it for about 5-6

years with no effect to my liver. My sister has RA and she just started it for

the first time. She said it has worked wonderfully for her. It seems to be

" running out " for me, so I will be starting Enbrel today. My daughter is 19 and

she said she was more than welcome to e-mail her if she wanted someone who's

closer to her age and has been through a lot herself. Her name is and her

e-mail is anfaith2002@.... She has been on quite a few medications

herself. Feel free to e-mail me as well if you want to.

Jackie

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-Hi Lori,

Welcome. I am always sorry to hear of a young person with such bad

PA. I also know how painful it is for the mother, It sounds like

they may have recommended a med called Methotrexate for your

daughter. The side effects can be scary. The good news is they have

learned how to monitor for them and also have learned how to get the

dosing better to minimize the bad effects. I have had PA since I was

10 years old. When I was your daughter's age they would not even

cosider giving me any strong meds until I was past the childbearing

years. Now they have a different philosophy and hope that if they

get to the disease quicker they can prevent joint damage.

I don't know how Docs feel about giving a new class of

drugs,biologics, to young people. They are Enbrel,Remicade,and

Humira. Just my opinion: It seems like your daughter has such a sever

case and the hope with these new meds is that they will drastically

reduce damage. Also, when they are successful they are like a

miracle for some people with the pain. Several of my Docs have said

they are sorry these meds weren't available when I was younger.

I think it is good for you and your daughter to be aware of the meds

that cause birth defects-I have read people on the board talk about

successful pregnancies so you can reassure your daughter it is quite

possible.

I think you can reaasure your daughter-you put it a good way-that she

will have a REASONABLY normal life. Unfortunaltely. Pa is a chronic

disease and interupts the life but it is very possible yo have a

GOOD life with the illness.

This was very long winded. I hope it helped. My heart goes out to

you and your daughter!

Best Wishes.

Marti

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  • 2 years later...

It is with sorrow and compassion that I answer your plea, that of a

mother in search of what is best for her child. My own son is 12.

If he ever showed positive for PA, I'd be quite sad. I'd be doing

as you are now, looking for answers that can support him.

I am only new here, myself; but I see that there are over 45,000

entries to the site. I would search the site for answers. There

are 92 newsletters. If you perform a search on the site using the

word " newsletter " , you will find that previous issues will show up

in your search. There is much information to be gleaned from

these. Also the links provided here are excellent for informing

yourself. At her age, she may not want to read too much about it;

but she will always be able to remember that her Mom was willing to

inform herself about best current practice. If you go through the

links, you will also access to the links of the links. There is

lots of info, and if you dig around a bit, you will find the words

that speak best to you.

The good news is that people with strong minds and much heart are

doing intricate research on the mechanism and the treatment of this

disease.

I would also search for other people/groups who are near your

daughter's age who share her plight. Nothing like company for

sharing one's misery. She may be able to bear her PA better if she

has others to talk/write/chat with.

Best wishes... Brent Herman

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god bless you for your e mail still searching for answers but am feeling more

positive about things {the initail kick in the guts has gone} she has managed 3

days at school this week take care and again many thanks kate

skrewtz <brentherman@...> wrote:It is with sorrow and compassion that I

answer your plea, that of a

mother in search of what is best for her child. My own son is 12.

If he ever showed positive for PA, I'd be quite sad. I'd be doing

as you are now, looking for answers that can support him.

I am only new here, myself; but I see that there are over 45,000

entries to the site. I would search the site for answers. There

are 92 newsletters. If you perform a search on the site using the

word " newsletter " , you will find that previous issues will show up

in your search. There is much information to be gleaned from

these. Also the links provided here are excellent for informing

yourself. At her age, she may not want to read too much about it;

but she will always be able to remember that her Mom was willing to

inform herself about best current practice. If you go through the

links, you will also access to the links of the links. There is

lots of info, and if you dig around a bit, you will find the words

that speak best to you.

The good news is that people with strong minds and much heart are

doing intricate research on the mechanism and the treatment of this

disease.

I would also search for other people/groups who are near your

daughter's age who share her plight. Nothing like company for

sharing one's misery. She may be able to bear her PA better if she

has others to talk/write/chat with.

Best wishes... Brent Herman

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If you go to the American Arthritis Foundation's home page

(_www.arthritis.org_ (http://www.arthritis.org) ) and click on Communities, you

will see some

information pertaining to children with arthritis. I noticed that there are

even message boards similar to this in which you can communicate with other

parents of arthritic children. I think it is a good idea to also remain on

this

message board given our 2000 members know more about Psoriatic Arthritis

than probably any other group in the country. Just wanted to let you know

that there are other communities out there where you can receive understanding

and support.

Kathy F.

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