Re: 30, newly diagnosed with RA

[Guest guest]

I was 20 when I was diagnosed and am now 33.  Like you, I have had the benefit

of having " good " medicine available to me, alas it did me no good.  Six weeks

ago I was in the hopsital with bilateral knee replacements.  I pray that you

have RA that is much kinder.

 

Many on this list are younger.  As far as finding classes that cater to younger

arthritis patients, you can pretty much forget it.  With that said, the classes

and support groups I have been to locally have been fun being the youngest in

the class.  My classmates are so sweet and are quick to strike up a comversation

with me, because I am not the typical person who attends.  Go to them!  Usually

the Arthritis Foundation sponsors classes locally.

 

The best thing I can think of is to work on your muscles...do weight training. 

Joyce Vedral has some good videos for women that are weight training.  Before I

became incapacitated before knee replacements I used those videos and it

provided amazing results.  No matter how hard I exercised the RA caught up to me

though.

 

I was on Enbrel for a year and didn't help my inflammation at all.  Whether it

slowed anything...I doubt.

 

Shandi

From: paquet16 <paquet16@...>

Subject: [ ] 30, newly diagnosed with RA

Date: Thursday, August 21, 2008, 5:24 PM

I am new to the group and lost. My mother was diagnosed with RA at 18

and has lived 37 years treating her disease. During July 2008 I

began to have RA symptoms and was diagnosed August 4th. I am lucky

because there are so many treatments that are available to me that

were not to my mother. She has severe deformity in her hands, neck

and had both total knee replacements before she was 45 years old. I

have been around RA my whole life but when it happens to you, it is a

completely different experience.

I have been struggling with my daily activities and dealing with my

new diagnosis. Everything I read online is for much older age

people. I am 30 and I haven't been able to find any age appropriate

exercise classes, support groups etc. Can you suggest any websites,

classes or reading materials for a young active adult?

I will be taking Enbrel which will begin in 2 weeks. I am scared of

the needle but once the first shot is administered I think my fears

will slip away. I am eager to get the treatment started and feel

less pain. Do you have any additional information you can provide on

Enbrel other than what is offered on their website? Is anyone

currently taking this medication?

Thank you for any help!

[Guest guest]

I have been on Enbrel for over five years, and it is working

wonderfully well for me. I can hardly tell that I have RA. I also do

not have an adverse side effects except an occasional very mild

injection site reaction, about like a mosquito bite. Unfortunately, it

doesn't work that well for everybody, but several of us on this list

are getting good results. I hope that you will, too. Good luck!

Sue

On Thursday, August 21, 2008, at 05:24 PM, paquet16 wrote:

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

[Guest guest]

Hi

I'm 31 diagnosed in may with ra. Started methotrexate right away it

helped with my symptoms but not enough in my hands. Started enbrel

4wks ago. LOVE IT!!! I can bend all my fingers most of the time

(early am is still rough). Hope enbrel works well for you, I still

take the methotrexate too, I kinda hope I can go off the metho my hair

is falling out a little and you know I am a little vain and I like my

hair. Good Luck

Diane

[Guest guest]

Welcome to the group. You will find alot of information and support

(regardless of age) on this web board. You are not alone, I was 24

when I was dianosed and I am 31 now. It's hard...you can't keep up w/

friends, becoming less active is hard and the fatigue, is a pain. I

have heard that water excerises are great for people w/ RA. I myself

go to the gym and I work w/ a trainer who is deals specifically w/

chronic conditions.

Just remember, pain is a feeling...it's not who you are. This group

is awesome, but I also go to private theapy to help me with dealing

with my health conditions. I find it helpfull, but you will find

what works best for you. What works for someone else, may not work

for you...it might take a few mediction adjustments, trial and

error. Work with you rheumy, be honest with them. If you ever need

to vent, ask questions...you have come to the right place. Hang in

there.

>

> I am new to the group and lost. My mother was diagnosed with RA at

18

> and has lived 37 years treating her disease. During July 2008 I

> began to have RA symptoms and was diagnosed August 4th. I am lucky

> because there are so many treatments that are available to me that

> were not to my mother. She has severe deformity in her hands, neck

> and had both total knee replacements before she was 45 years old.

I

> have been around RA my whole life but when it happens to you, it is

a

> completely different experience.

>

> I have been struggling with my daily activities and dealing with my

> new diagnosis. Everything I read online is for much older age

> people. I am 30 and I haven't been able to find any age

appropriate

> exercise classes, support groups etc. Can you suggest any

websites,

> classes or reading materials for a young active adult?

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide

on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

[Guest guest]

Thank you all for your personal stories and support. I am sure I have

found a new network to help me cope with the new me! I look forward to

keeping in contact with the group! It is very helpful for me to hear

positive info/stories. I also am glad to hear I am not alone dealing

with being young and treating this disease. Thank you, thank you,

thank you!

>

> Hi

> I'm 31 diagnosed in may with ra. Started methotrexate right away it

> helped with my symptoms but not enough in my hands. Started enbrel

> 4wks ago. LOVE IT!!! I can bend all my fingers most of the time

> (early am is still rough). Hope enbrel works well for you, I still

> take the methotrexate too, I kinda hope I can go off the metho my

hair

> is falling out a little and you know I am a little vain and I like my

> hair. Good Luck

> Diane

>

[Guest guest]

Hi there -

You've come to the right place! This group has been extremely helpful

for me. I was diagnosed a year ago at the age of 31 and I too,

struggled with finding information for younger generatios with RA.

The Arthritis Foundation has been extremely helpful to me as well. I

really enjoy their magazine.

If you'd like to chat more, compare experiences, etc., feel free to

email me.

>

> I am new to the group and lost. My mother was diagnosed with RA at

18

> and has lived 37 years treating her disease. During July 2008 I

> began to have RA symptoms and was diagnosed August 4th. I am lucky

> because there are so many treatments that are available to me that

> were not to my mother. She has severe deformity in her hands, neck

> and had both total knee replacements before she was 45 years old.

I

> have been around RA my whole life but when it happens to you, it is

a

> completely different experience.

>

> I have been struggling with my daily activities and dealing with my

> new diagnosis. Everything I read online is for much older age

> people. I am 30 and I haven't been able to find any age

appropriate

> exercise classes, support groups etc. Can you suggest any

websites,

> classes or reading materials for a young active adult?

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide

on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

[Guest guest]

Thank you Meagan.  I have looked at the magazine online but I will definitely

get a subscription!  I am open to reading, trying and using anything to help

me! 

From: megan_hartman <megan_hartman@...>

Subject: [ ] Re: 30, newly diagnosed with RA

Date: Friday, August 22, 2008, 11:25 AM

Hi there -

You've come to the right place! This group has been extremely helpful

for me. I was diagnosed a year ago at the age of 31 and I too,

struggled with finding information for younger generatios with RA.

The Arthritis Foundation has been extremely helpful to me as well. I

really enjoy their magazine.

If you'd like to chat more, compare experiences, etc., feel free to

email me.

>

> I am new to the group and lost. My mother was diagnosed with RA at

18

> and has lived 37 years treating her disease. During July 2008 I

> began to have RA symptoms and was diagnosed August 4th. I am lucky

> because there are so many treatments that are available to me that

> were not to my mother. She has severe deformity in her hands, neck

> and had both total knee replacements before she was 45 years old.

I

> have been around RA my whole life but when it happens to you, it is

a

> completely different experience.

>

> I have been struggling with my daily activities and dealing with my

> new diagnosis. Everything I read online is for much older age

> people. I am 30 and I haven't been able to find any age

appropriate

> exercise classes, support groups etc. Can you suggest any

websites,

> classes or reading materials for a young active adult?

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide

on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

[Guest guest]

Sorry that I am so late in responding.

This is a warm welcome to our group but I wish you were just seeking

information and not another RA patient.

I have been waiting a couple of weeks myself to start Enbrel. I wish

that I could give you first hand experience though. I have a friend

that has had many surgeries because of RA and she was so glad that

my doctor was changing me to Enbrel. Like you said the medications

are so much better now.

It is scary but with a little time to adjust you will for a better

attitude. I hope Enbrel is your miracle worker.

Shirley

>

> I am new to the group and lost. My mother was diagnosed with RA at

18

> and has lived 37 years treating her disease. During July 2008 I

> began to have RA symptoms and was diagnosed August 4th. I am

lucky

> because there are so many treatments that are available to me that

> were not to my mother. She has severe deformity in her hands,

neck

> and had both total knee replacements before she was 45 years old.

I

> have been around RA my whole life but when it happens to you, it

is a

> completely different experience.

>

> I have been struggling with my daily activities and dealing with

my

> new diagnosis. Everything I read online is for much older age

> people. I am 30 and I haven't been able to find any age

appropriate

> exercise classes, support groups etc. Can you suggest any

websites,

> classes or reading materials for a young active adult?

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared

of

> the needle but once the first shot is administered I think my

fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide

on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

[Guest guest]

I’m sorry you have the

disease. I’m 80 so I can’t help you with the younger set but

I am on a board at the Arthritis Foundation that includes people of all

ages. I think Brenna1 is a very active 31-year-old who might be able to

help you or steer you to an age-appropriate board. I don’t usually

like to push one board while posting on another but you asked for something

specific and I think the other board may lead you to what you are seeking.

I hope you find the kind of help you want. God bless.

http://community.arthritis.org/FORUMS/default.aspx

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of paquet16

Sent: Thursday, August 21, 2008

2:26 PM

Rheumatoid Arthritis

Subject: 30,

newly diagnosed with RA

I am new to the group and lost. My mother was

diagnosed with RA at 18

and has lived 37 years treating her disease. During July 2008 I

began to have RA symptoms and was diagnosed August 4th. I am lucky

because there are so many treatments that are available to me that

were not to my mother. She has severe deformity in her hands, neck

and had both total knee replacements before she was 45 years old. I

have been around RA my whole life but when it happens to you, it is a

completely different experience.

I have been struggling with my daily activities and dealing with my

new diagnosis. Everything I read online is for much older age

people. I am 30 and I haven't been able to find any age appropriate

exercise classes, support groups etc. Can you suggest any websites,

classes or reading materials for a young active adult?

I will be taking Enbrel which will begin in 2 weeks. I am scared of

the needle but once the first shot is administered I think my fears

will slip away. I am eager to get the treatment started and feel

less pain. Do you have any additional information you can provide on

Enbrel other than what is offered on their website? Is anyone

currently taking this medication?

Thank you for any help!

[Guest guest]

Dear Newly Diagnosed- The psychological blow is very difficult at first. Its a shock, you may experience denial etc. You might want to attend a local athritis foundation group meeting in your area. There are chapters in every state. I would advocate for Remicade or Rituxan as its administered by IV over three hours and you dont have to get another for 8 weeks. With Rituxan its 6 months. No sharps to deal with or needles to sting or meds to refrigerate. Your life will change after the biologic. You will be able to resume your daily activities and the disease symptoms will have less impact on you. You can now be as aggressive with your disease as it is with you so the damage your mother had wont apply to you hopefully. I have had RA since I was 33 and am now 47. Once on the biologic when taken in conjunction with Methotrexate, be sure to remember that you are highly susceptible to infection so stay away from people with colds, keep some hand sanitizer with you and wash you hands often. Eat a healthy diet. Do some research on both Colloidal Silver and Fulvic Acid. Should you get an infection, Colloidal in 250ppm or higher can be very useful. Be sure to have your thyroid checked. You may experience chronic fatigue and fibromyalgia over time but being newly diagnosed and on a biologic you should be fine. You might think of seeing a therapist who specializes in chronic illness. Remember to protect your joints, do non aerobic activity to avoid jarring your joints, (walking, swimming etc) Keep your weight down to minimize on joint stress as well. I was a support group leader for the arthritis foundation so I can recommend them highly. Their " Athritis Today " Magazine is a great help also. www.arthritisfoundation.org. If you have any other questions, please feel free to ask. Email me offlist. Yours, Deborah

On Fri, Sep 5, 2008 at 6:27 PM, Harold Van Tuyl <hvantuyl@...> wrote:

I'm sorry you have the

disease. I'm 80 so I can't help you with the younger set but

I am on a board at the Arthritis Foundation that includes people of all

ages. I think Brenna1 is a very active 31-year-old who might be able to

help you or steer you to an age-appropriate board. I don't usually

like to push one board while posting on another but you asked for something

specific and I think the other board may lead you to what you are seeking.

I hope you find the kind of help you want. God bless.

http://community.arthritis.org/FORUMS/default.aspx

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of paquet16

Sent: Thursday, August 21, 2008

2:26 PM

Rheumatoid Arthritis

Subject: 30,

newly diagnosed with RA

I am new to the group and lost. My mother was

diagnosed with RA at 18

and has lived 37 years treating her disease. During July 2008 I

began to have RA symptoms and was diagnosed August 4th. I am lucky

because there are so many treatments that are available to me that

were not to my mother. She has severe deformity in her hands, neck

and had both total knee replacements before she was 45 years old. I

have been around RA my whole life but when it happens to you, it is a

completely different experience.

I have been struggling with my daily activities and dealing with my

new diagnosis. Everything I read online is for much older age

people. I am 30 and I haven't been able to find any age appropriate

exercise classes, support groups etc. Can you suggest any websites,

classes or reading materials for a young active adult?

I will be taking Enbrel which will begin in 2 weeks. I am scared of

the needle but once the first shot is administered I think my fears

will slip away. I am eager to get the treatment started and feel

less pain. Do you have any additional information you can provide on

Enbrel other than what is offered on their website? Is anyone

currently taking this medication?

Thank you for any help!

[Guest guest]

Welcome,

I am sorry to hear your Mom has suffered so many years. Just like

your Mom, I have lived with RA for a very long time. With a quack

for a doctor, he never told me I had RA, just, " arthritis. "

I had no idea there were different ones. I had a back injury, and

was physically abused, so I just thought my aches and pains were from

all my fractures.

It is devastating when your first diagnosed. I'm glad you have the

opportunity to get some better meds then your Mom. I hope the Enbrel

works well for you. They have the Enbrel pre-filled pens, if your

scared of the pen. It's very easy, and not as scary.

Have you checked out, www.arthritis.org lots of info, and they also

have a great magazine. Also, www.arthritisinsight.com is a good

sight for all ages.

I have taken Enbrel, and I am currently on Humira, for the second

time. I am going to try Remicade next.

Just remember, you have to keep trying to find the right med to work

for you. We are all survivors, no matter what age. Were bonded by

this horrible disease. But, we've found each other for a REASON.

You take care, and best wishes, Tawny

>

> I am new to the group and lost. My mother was diagnosed with RA at

18

> and has lived 37 years treating her disease. During July 2008 I

> began to have RA symptoms and was diagnosed August 4th. I am lucky

> because there are so many treatments that are available to me that

> were not to my mother. She has severe deformity in her hands, neck

> and had both total knee replacements before she was 45 years old.

I

> have been around RA my whole life but when it happens to you, it is

a

> completely different experience.

>

> I have been struggling with my daily activities and dealing with my

> new diagnosis. Everything I read online is for much older age

> people. I am 30 and I haven't been able to find any age

appropriate

> exercise classes, support groups etc. Can you suggest any

websites,

> classes or reading materials for a young active adult?

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide

on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

[Guest guest]

Oops! They have the Enbrel Pen, if you are scared of the Enbrel

syringe. I worded that wrong, so just wanted to post. I was scared

to death, just thinking about giving myself an injection. My hubby

gave it to me for awhile, and then one day I was ready. I like the

new pre-filled pen, it's so much easier. Now, that my RA has gotten

worse in my hands, it just makes my life a little easier.

Tawny

>

> Welcome,

>

> I am sorry to hear your Mom has suffered so many years. Just like

> your Mom, I have lived with RA for a very long time. With a quack

> for a doctor, he never told me I had RA, just, " arthritis. "

> I had no idea there were different ones. I had a back injury, and

> was physically abused, so I just thought my aches and pains were

from

> all my fractures.

> It is devastating when your first diagnosed. I'm glad you have the

> opportunity to get some better meds then your Mom. I hope the

Enbrel

> works well for you. They have the Enbrel pre-filled pens, if your

> scared of the pen. It's very easy, and not as scary.

> Have you checked out, www.arthritis.org lots of info, and they also

> have a great magazine. Also, www.arthritisinsight.com is a good

> sight for all ages.

> I have taken Enbrel, and I am currently on Humira, for the second

> time. I am going to try Remicade next.

> Just remember, you have to keep trying to find the right med to

work

> for you. We are all survivors, no matter what age. Were bonded by

> this horrible disease. But, we've found each other for a REASON.

> You take care, and best wishes, Tawny

>

>

>

>

>

[Guest guest]

I took Enbrel and found it helped.

Tip: be sure that the swabbed alcohol area dries first (so it won't sting as

much).

And although it may not sound attractive, I found that injecting into the

fatty portion 2 " from the navel was far less painful than in the top of the

thigh (where I would bruise).

Good luck!

-----Original Message-----

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of paquet16

Sent: Thursday, August 21, 2008 4:26 PM

Rheumatoid Arthritis

Subject: 30, newly diagnosed with RA

I am new to the group and lost. My mother was diagnosed with RA at 18

and has lived 37 years treating her disease. During July 2008 I

began to have RA symptoms and was diagnosed August 4th. I am lucky

because there are so many treatments that are available to me that

were not to my mother. She has severe deformity in her hands, neck

and had both total knee replacements before she was 45 years old. I

have been around RA my whole life but when it happens to you, it is a

completely different experience.

I have been struggling with my daily activities and dealing with my

new diagnosis. Everything I read online is for much older age

people. I am 30 and I haven't been able to find any age appropriate

exercise classes, support groups etc. Can you suggest any websites,

classes or reading materials for a young active adult?

I will be taking Enbrel which will begin in 2 weeks. I am scared of

the needle but once the first shot is administered I think my fears

will slip away. I am eager to get the treatment started and feel

less pain. Do you have any additional information you can provide on

Enbrel other than what is offered on their website? Is anyone

currently taking this medication?

Thank you for any help!

[Guest guest]

eNBREL WORKS GREAT FOR ME, i HAD r/a FOR MY WHOLE LIfE

From: <karenbeyke@...>Subject: RE: 30, newly diagnosed with RARheumatoid Arthritis Date: Thursday, September 11, 2008, 7:20 AM

I took Enbrel and found it helped.Tip: be sure that the swabbed alcohol area dries first (so it won't sting asmuch).And although it may not sound attractive, I found that injecting into thefatty portion 2" from the navel was far less painful than in the top of thethigh (where I would bruise).Good luck!-----Original Message-----From: rheumatoid_arthriti sgroups (DOT) com[mailto:rheumatoid_arthriti sgroups (DOT) com] On Behalf Of paquet16Sent: Thursday, August 21, 2008 4:26 PMrheumatoid_arthriti sgroups (DOT) comSubject: [rheumatoid_ arthritis] 30, newly diagnosed with RAI am new to the group and lost. My mother was diagnosed

with RA at 18 and has lived 37 years treating her disease. During July 2008 I began to have RA symptoms and was diagnosed August 4th. I am lucky because there are so many treatments that are available to me that were not to my mother. She has severe deformity in her hands, neck and had both total knee replacements before she was 45 years old. I have been around RA my whole life but when it happens to you, it is a completely different experience. I have been struggling with my daily activities and dealing with my new diagnosis. Everything I read online is for much older age people. I am 30 and I haven't been able to find any age appropriate exercise classes, support groups etc. Can you suggest any websites, classes or reading materials for a young active adult? I will be taking Enbrel which will begin in 2 weeks. I am scared of the needle but once the first shot is administered I think my

fears will slip away. I am eager to get the treatment started and feel less pain. Do you have any additional information you can provide on Enbrel other than what is offered on their website? Is anyone currently taking this medication? Thank you for any help!

[Guest guest]

>

> I will be taking Enbrel which will begin in 2 weeks. I am scared of

> the needle but once the first shot is administered I think my fears

> will slip away. I am eager to get the treatment started and feel

> less pain. Do you have any additional information you can provide on

> Enbrel other than what is offered on their website? Is anyone

> currently taking this medication?

>

> Thank you for any help!

>

Paquet--Just read your post.

I was diagnosed with RA three years ago at the age of 39. It was

really scary at first.

I started MTX right away and Enbrel about a year later. I just want

to let you know I've had great results with my treatment. After being

on Enbrel for about a month and a half, I was able to take my rings

off of my fingers for the first time in almost a year and a half. My

activity level is pretty close (not quite but pretty close) to it was

prior to my diagnosis. I try to stay active by walking and doing some

light weights--although I have to admit to ignoring the weights

lately. I also try to do stretches to keep my range of motion in my

joints.

For Enbrel, I use the Sureclick injectors. I really like them because

I don't see the needles. Like , I also inject in my stomach.

MUCH less painful for me than my thighs.

You might check out the Arthritis foundation's website--they have a

lot of good info there. I also subscribe to their magazine,

" Arthritis Today " . I find it has lots of good info regarding

exercises, diet, etc.

Good luck to you! I hope that Enbrel works as well for you as it has

for me, but remember that if it doesn't there are a lot of other options.

dordale

[Guest guest]

Hi I have been taking Enbrel for the last 3 years. It works great for me. Let the Alcohol dry well before the injection, hepls take the sting out of it. Hope you do well also.

Cheers

Mike

From: dordale8 <dordale8@...>Subject: Re: 30, newly diagnosed with RARheumatoid Arthritis Date: Tuesday, September 16, 2008, 8:54 PM

> > I will be taking Enbrel which will begin in 2 weeks. I am scared of > the needle but once the first shot is administered I think my fears > will slip away. I am eager to get the treatment started and feel > less pain. Do you have any additional information you can provide on > Enbrel other than what is offered on their website? Is anyone > currently taking this medication? > > Thank you for any help!>Paquet--Just read your post. I was diagnosed with RA three years ago at the age of 39. It wasreally scary at first. I started MTX right away and Enbrel about a year later. I just wantto let you know I've had great results with my treatment. After beingon Enbrel for about a month and a half, I was able to take my ringsoff of my fingers for the first time in almost a year and a half. Myactivity level is pretty close (not quite but pretty

close) to it wasprior to my diagnosis. I try to stay active by walking and doing somelight weights--although I have to admit to ignoring the weightslately. I also try to do stretches to keep my range of motion in myjoints.For Enbrel, I use the Sureclick injectors. I really like them becauseI don't see the needles. Like , I also inject in my stomach. MUCH less painful for me than my thighs.You might check out the Arthritis foundation's website--they have alot of good info there. I also subscribe to their magazine,"Arthritis Today". I find it has lots of good info regardingexercises, diet, etc.Good luck to you! I hope that Enbrel works as well for you as it hasfor me, but remember that if it doesn't there are a lot of other options.dordale