Re: new to this site just started enbrel

[Guest guest]

Hi and welcome!

I don't have any advice about Enbrel, I am just starting methotrexate in the

next two weeks. But I had to write because we are similar in age (I'm 29) and I

also got arthritis very young (12) and my oldest daughter is 9. I struggle with

depression a lot too, it's hard when you have young kids and you want to be the

best mom and most involved mom you can be, I understand. If your like me you

just want to be " NORMAL " and it is hard to accept that you have a disability.

Try and give yourself a break, that's what I'm trying to do. Keep your chin

up!

Love,

in Chicago

tiburonnn2001 <tiburonnn2001@...> wrote:

Hi Everyone,

I am new to this site. Just happy to have found another one. I was

on psoriasis support but it is not working anymore for some reason.

Anyways i am 30 years old. I have had psoriasis since i was 14 and

psoriatic arthritis since i was 24. It has gotten very bad lately. I

was on remicade but after getting strep throat it stopped working so

now i am on Enbrel shots ( i have done 2 so far), methotrexate, and

medrol steroids until i can get it back under sontrol. th ep is not

bothersome at all it is the pa that is very painful. I am also starting

to come down with a cold or some type of infection. I feel crappy. Does

anyone have any advice or exeperiences with enbrel. Or anything i can

do right now to feel better. I am just very depressed right now. I have

a 7 year old daughter and i am sick of not being able to do much and

feeling yucky all the time any help would be great, Thanks so much for

letting me vent a little. I do not have anyone who really understands

any of this . thanks again Crissy

[Guest guest]

Hi

Thanks so much for responding it is very nice to here from some one

who also is also around my age with the same disease. Yes i also

have those feelings of just wanting to be normal but i am glad to

have met you. the methotrexate worked for me in the beginning so

good luck just be careful you will be much more prone to infections,

colds etc. but it has been worth it for me to be sick with a cold

and not in paian everyday from the pa. also make sure you get your

blood tests always done which i am sure you doctor will schedule. I

am always worried about my daughter getting it do any of your

children have psoriasis aor psoriatic arthritis? Thanks again for

responding back. Keep smiling!! Love, crissy

In , JEFF DELAZZER

<jdelazzer@...> wrote:

>

> Hi and welcome!

> I don't have any advice about Enbrel, I am just starting

methotrexate in the next two weeks. But I had to write because we

are similar in age (I'm 29) and I also got arthritis very young (12)

and my oldest daughter is 9. I struggle with depression a lot too,

it's hard when you have young kids and you want to be the best mom

and most involved mom you can be, I understand. If your like me you

just want to be " NORMAL " and it is hard to accept that you have a

disability.

> Try and give yourself a break, that's what I'm trying to do.

Keep your chin up!

>

> Love,

> in Chicago

[Guest guest]

Crissy....Welcome. I just found this site a few weeks ago and already feel a

tremendous sense of community and support. What a relief that is to me and I

hope will be for you. I too am a Mom. My daughter is 11 and has high functioning

autism, serious obsessive compulsive disorder and mood disorder. She was

hospitalized in Feb and my last flare up started in March. No surprise. I am

starting Enbrel as soon as my HMO approves. The prescription is sitting at the

pharmacy waiting for the call to go ahead and fill it. I'm ready to go with it.

I need to be there for my daughter but I need to be there for me too. I miss my

old self. Depression is a part of this you know....and you can request

medication for that if you need to. Just getting on the right pain medication

helped me recently. I tried Naprosen and Mobic. Each gave me relief for a few

hours. Now I'm taking Ultracet and it's amazing how much my depression was

alleviated just by easing my pain. I am able to walk a little

better now that the pain is not so severe. For us Moms, it's hard to get the

rest we need. That's the biggest challenge for me. And I don't want to nap. I'm

45 next month but a young, feisty 45. I am not ready for naps or Geritol. But I

know that they help. Can you nap when your daughter is in school? Or is the

depression making you sleep alot already? And I guess you have to tell your

doctor if you are getting a cold or infection with the Enbrel too. You will get

help on this site. Lots of information and lots of support. It feels good to not

be alone with all of this. I bet you feel that way sometimes. Your daughter will

be fine if she sees Mom rising above it and being bigger than the disease. She

will have trials in her life and she'll be able to look back and see how Mom

handled it and from that, she'll know she can make it. And she'll know she can

come to you for advise and good old fashioned love because YOU made it. It sucks

that we have this. But I have realized

that I have an opportunity to use this experience (if you want to call it

that....lol) as a tool in raising my daughter. When she was dying to get outside

as winter in the Hudson Valley was winding down, we would go out and play

baseball only everyone had to walk since I could not run. It was hysterical.

Ball in slow-mo. I'd throw the ball at her and she would be going slow enough

that she was able to duck and not get hit. She has issues that we have to mold

our lives around and I have them as well with this PA. She loves anything with

initials now. Between us we have PA, AS, OCD, and MA. Sometimes she wants to

talk with initials. It's not easy either. lol. I'm a transplanted southerner so

I can barely speak the language as it is. But we make it and you'll make it.

You've taken the right steps already. Just keep taking steps.....but rest when

you need it too. Before my went into the hospital, I heard her telling

God that she was too tired to even let Him carry her

right now. She loves that Footprints in the Sand poem and has a few copies of

it in her room. My heart was breaking hearing her tell God that...knowing that

she was that exhausted from her journey in life. I know how that feels. We

decided that the journey does not always have to have a forward momentum.

Sometimes you gotta just sit and rest on the shore Honey. That's what and

I call Butt prints in the Sand. It's ok to rest. It's ok just to stop from time

to time. As a Mom, you can't take a whole day to do it but grab moments when you

can. And then make little steps once you catch your breath. Little steps like

getting on this site. You'll get there. And now you have traveling companions.

I'll keep you in my prayers and thoughts. Hope you feel better shortly. -Betz

[Editor's Note: Ah, the Hudson Valley. We have a home near Woodstock on Ohayo

Mountain. Where are you? Kathy F.]

tiburonnn2001 <tiburonnn2001@...> wrote: Hi Everyone,

I am new to this site. Just happy to have found another one. I was

on psoriasis support but it is not working anymore for some reason.

Anyways i am 30 years old. I have had psoriasis since i was 14 and

psoriatic arthritis since i was 24. It has gotten very bad lately. I

was on remicade but after getting strep throat it stopped working so

now i am on Enbrel shots ( i have done 2 so far), methotrexate, and

medrol steroids until i can get it back under sontrol. th ep is not

bothersome at all it is the pa that is very painful. I am also starting

to come down with a cold or some type of infection. I feel crappy. Does

anyone have any advice or exeperiences with enbrel. Or anything i can

do right now to feel better. I am just very depressed right now. I have

a 7 year old daughter and i am sick of not being able to do much and

feeling yucky all the time any help would be great, Thanks so much for

letting me vent a little. I do not have anyone who really understands

any of this . thanks again Crissy

[Guest guest]

Hi Betz,

Thank you also for responding. It is amazing what a kind of sense

of relief or comfort( i am no tsure of the right words) it is to

talk to people that know what i am going through. I know someone

mentioned medicine for the depression I am on Zoloft for depression

i actually just asked my dr. if i could increase at least until some

of the pain hopefully starts subsiding with the enbrel. which it

hopefully willl. and i will start feeling like myself again. But

this morning i was told by my rheumy that i could not take my enbrel

shot because i am on an antibiotic because i have a cold and swollen

lmoh nodes in my neck. she could not she any real bacterial

infection but just to be safe she put me on antibiotics. so my

rheumy told me to wait until i finish the antibiotics on monday and

then take my shot. she said it could make me much sicker if i took

it. Has anyone ever experienced this if yes i would love to hear

about it. Also i was wondering if anyone knows of any thing local to

me like a support group for p or pa. I live in New Hampshire. Well i

will sign off now thanks again for writing to me. I feels wonderful

to talk to people that know what i am going through. Crissy

- In , Betsy Jack <itsbetsy@...>

wrote:

>

> Crissy....Welcome. I just found this site a few weeks ago and

already feel a tremendous sense of community and support. What a

relief that is to me and I hope will be for you. I too am a Mom. My

daughter is 11 and has high functioning autism, serious obsessive

compulsive disorder and mood disorder. She was hospitalized in Feb

and my last flare up started in March. No surprise. I am starting

Enbrel as soon as my HMO approves. The prescription is sitting at

the pharmacy waiting for the call to go ahead and fill it. I'm ready

to go with it. I need to be there for my daughter but I need to be

there for me too. I miss my old self. Depression is a part of this

you know....and you can request medication for that if you need to.

Just getting on the right pain medication helped me recently. I

tried Naprosen and Mobic. Each gave me relief for a few hours. Now

I'm taking Ultracet and it's amazing how much my depression was

alleviated just by easing my pain. I am able to walk a little

> better now that the pain is not so severe. For us Moms, it's hard

to get the rest we need. That's the biggest challenge for me. And I

don't want to nap. I'm 45 next month but a young, feisty 45. I am

not ready for naps or Geritol. But I know that they help. Can you

nap when your daughter is in school? Or is the depression making you

sleep alot already? And I guess you have to tell your doctor if you

are getting a cold or infection with the Enbrel too. You will get

help on this site. Lots of information and lots of support. It feels

good to not be alone with all of this. I bet you feel that way

sometimes. Your daughter will be fine if she sees Mom rising above

it and being bigger than the disease. She will have trials in her

life and she'll be able to look back and see how Mom handled it and

from that, she'll know she can make it. And she'll know she can come

to you for advise and good old fashioned love because YOU made it.

It sucks that we have this. But I have realized

> that I have an opportunity to use this experience (if you want to

call it that....lol) as a tool in raising my daughter. When she was

dying to get outside as winter in the Hudson Valley was winding

down, we would go out and play baseball only everyone had to walk

since I could not run. It was hysterical. Ball in slow-mo. I'd throw

the ball at her and she would be going slow enough that she was able

to duck and not get hit. She has issues that we have to mold our

lives around and I have them as well with this PA. She loves

anything with initials now. Between us we have PA, AS, OCD, and MA.

Sometimes she wants to talk with initials. It's not easy either.

lol. I'm a transplanted southerner so I can barely speak the

language as it is. But we make it and you'll make it. You've taken

the right steps already. Just keep taking steps.....but rest when

you need it too. Before my went into the hospital, I heard

her telling God that she was too tired to even let Him carry her

> right now. She loves that Footprints in the Sand poem and has a

few copies of it in her room. My heart was breaking hearing her tell

God that...knowing that she was that exhausted from her journey in

life. I know how that feels. We decided that the journey does not

always have to have a forward momentum. Sometimes you gotta just sit

and rest on the shore Honey. That's what and I call Butt

prints in the Sand. It's ok to rest. It's ok just to stop from time

to time. As a Mom, you can't take a whole day to do it but grab

moments when you can. And then make little steps once you catch your

breath. Little steps like getting on this site. You'll get there.

And now you have traveling companions. I'll keep you in my prayers

and thoughts. Hope you feel better shortly. -Betz

[Guest guest]

Hi Crissy,

Feel free to talk to me anytime. I got my methotrexate but I decided to wait

till Monday to start taking it. None of my daughters show sign of Psoriasis or

PA so far which is good. I always kind of feel like Hannah is out of the woods

because she is 9 and I got mine so early but I guess that's not always the case.

The only thing I do worry about is one of my twins has complained on and off for

a couple years about her right knee hurting. Sometimes she is in tears over it,

not very often but sometimes. I plan to ask her pediatrian to order an X-ray

just to make me feel better.

Take care and best wishes,

tiburonnn2001 <tiburonnn2001@...> wrote:

Hi

Thanks so much for responding it is very nice to here from some one

who also is also around my age with the same disease. Yes i also

have those feelings of just wanting to be normal but i am glad to

have met you. the methotrexate worked for me in the beginning so

good luck just be careful you will be much more prone to infections,

colds etc. but it has been worth it for me to be sick with a cold

and not in paian everyday from the pa. also make sure you get your

blood tests always done which i am sure you doctor will schedule. I

am always worried about my daughter getting it do any of your

children have psoriasis aor psoriatic arthritis? Thanks again for

responding back. Keep smiling!! Love, crissy

[Guest guest]

Hi Crissy:

My Rheumy won't let me take my Methotrexate if I am sick or on anti biotics,

the reason is these drugs suppress the immune system, therefore making it

easier for infections to get bad. It is important to go off them if you get

sick, have surgery, etc..

It is very frustrating for me as I get chronic sinus infections, and just

when I feel like I am getting going with the meds, I get sick again and have

to stop....major bummer..Many of these medicine are actually drugs used to

fight cancer, but we take then at lower doses.

Good Luck

Jeanette

[ ] Re: new to this site just started enbrel

Hi Betz,

Thank you also for responding. It is amazing what a kind of sense

of relief or comfort( i am no tsure of the right words) it is to

talk to people that know what i am going through. I know someone

mentioned medicine for the depression I am on Zoloft for depression

i actually just asked my dr. if i could increase at least until some

of the pain hopefully starts subsiding with the enbrel. which it

hopefully willl. and i will start feeling like myself again. But

this morning i was told by my rheumy that i could not take my enbrel

shot because i am on an antibiotic because i have a cold and swollen

lmoh nodes in my neck. she could not she any real bacterial

infection but just to be safe she put me on antibiotics. so my

rheumy told me to wait until i finish the antibiotics on monday and

then take my shot. she said it could make me much sicker if i took

it. Has anyone ever experienced this if yes i would love to hear

about it. Also i was wondering if anyone knows of any thing local to

me like a support group for p or pa. I live in New Hampshire. Well i

will sign off now thanks again for writing to me. I feels wonderful

to talk to people that know what i am going through. Crissy

[Guest guest]

Hi Crissy,

Whatever you do - if you're on an antibiotic wait to take the shot.

Once I was on a Z-pack, which you take for five days but then it

works for another five. Forgot about the additional time, since I

wasn't popping the pill each day, and took my shot...ended up sick

again. I've had sinus troubles since age 5 and since I live in a

rural area the lovely farmers burning wheat fields, etc. do not help

matters...so my experience with the enbrel has been to err on the

side of caution and skip a week if I think I have an infection or

know I do and have had antibiotics.

As for a support group in your area, I'd suggest contacting the

Arthritis Foundation in your state.

BTW I'm 32 and in Arkansas. Have been on Enbrel since mid-2005 - was

diagnosed at 20 originally with RA - rheumy didn't figure out it was

actually PA until 10 years later due to the fact my psoriasis is

hidden in my hair - well, for the most part anyway...sausage fingers

and toes gave it away then. Take care.

Peace,

Jenn in Arkansas

>

> Hi Betz,

> Thank you also for responding. It is amazing what a kind of sense

> of relief or comfort( i am no tsure of the right words) it is to

> talk to people that know what i am going through. I know someone

> mentioned medicine for the depression I am on Zoloft for depression

> i actually just asked my dr. if i could increase at least until

some

> of the pain hopefully starts subsiding with the enbrel. which it

> hopefully willl. and i will start feeling like myself again. But

> this morning i was told by my rheumy that i could not take my

enbrel

> shot because i am on an antibiotic because i have a cold and

swollen

> lmoh nodes in my neck. she could not she any real bacterial

> infection but just to be safe she put me on antibiotics. so my

> rheumy told me to wait until i finish the antibiotics on monday and

> then take my shot. she said it could make me much sicker if i took

> it. Has anyone ever experienced this if yes i would love to hear

> about it. Also i was wondering if anyone knows of any thing local

to

> me like a support group for p or pa. I live in New Hampshire. Well

i

> will sign off now thanks again for writing to me. I feels wonderful

> to talk to people that know what i am going through. Crissy

[Guest guest]

Hi Jeannette

I came across this info on one of the health groups, could even

have been here! ( where did I put my memory-lol ) Thought it might be

helpful to some folks that are having drug problems. Turns out that we

all don't metabolize drugs with the same efficiency - some more some

less. This makes the " normal " doseage way too little or way too much

for a percentage ( maybe 10-20% ) of us.

http://www.healthanddna.com/drugreactiontest.html

The test costs around $600, *some* insurance companies cover it. This

is still too expensive to use as a regular screening test, but I think

it could offer valuable info and alternative treatments to physicians

of patients having exceptionally good or bad reactions to certain drugs.

Cheers -

>

> Hi Crissy:

> My Rheumy won't let me take my Methotrexate if I am sick or on anti

biotics,

> the reason is these drugs suppress the immune system, therefore

making it

> easier for infections to get bad. It is important to go off them if

you get

> sick, have surgery, etc..

> It is very frustrating for me as I get chronic sinus infections, and

just

> when I feel like I am getting going with the meds, I get sick again

and have

> to stop....major bummer..Many of these medicine are actually drugs

used to

> fight cancer, but we take then at lower doses.

> Good Luck

> Jeanette

[Guest guest]

Hi,

yeah, this is all so true. A 6 foot 300 pound man will be diff then a 4 1/2

foot female who weight 100 pounds. Big difference. Many times I take 1/2 the

dosage to see if that will be enough for me, like with pain meds, etc..

Jeanette

[ ] Re: new to this site just started enbrel

> Hi Jeannette

> I came across this info on one of the health groups, could even

> have been here! ( where did I put my memory-lol ) Thought it might be

> helpful to some folks that are having drug problems. Turns out that we

> all don't metabolize drugs with the same efficiency - some more some

> less. This makes the " normal " doseage way too little or way too much

> for a percentage ( maybe 10-20% ) of us.

>

> http://www.healthanddna.com/drugreactiontest.html

>

> The test costs around $600, *some* insurance companies cover it. This

> is still too expensive to use as a regular screening test, but I think

> it could offer valuable info and alternative treatments to physicians

> of patients having exceptionally good or bad reactions to certain drugs.

>

> Cheers -

>

[Guest guest]

In a message dated 5/19/2006 3:08:46 A.M. Pacific Daylight Time,

yonder@... writes:

for me as I get chronic sinus infections, and just

when I feel like I am getting going with the meds, I get sick again and have

to stop....major bummer..

I've just returned to full time work and a job filled with travel...since

Enbrel and Remicade, I have found that I pick up any upper respiratory thing

going around, and I get sick every time I fly on a plane.

My regular doctor told me about an OTC solution to help...it is called

alkalol and sells for only $3.50 or so (you usually have to special order it at

the pharmacy even though its OTC). My doctor told me to mix it 50/50 with

saline spray like Ocean Spray. She told me to gargle with it and spray it up

my

nose any time I sense I am getting sick, and before and after flying.

This stuff has been like a miracle for me...the alkalol is made from camphor

and eucalyptus I think, and with the saline it is a " mucus buster. " The

doctor told me that bacteria needs mucus to grow in (lovely, huh?), so if you

remove the mucus, then you can avoid some infections.

For so little money and hassle, this is now one of my all time favorite

remedies:-)

[Guest guest]

Hi :

I will have to try that, thanks, and you are right, being that cheap, how

can I loose.

Jeanette

Re: [ ] Re: new to this site just started enbrel

>

> In a message dated 5/19/2006 3:08:46 A.M. Pacific Daylight Time,

> yonder@... writes:

>

> for me as I get chronic sinus infections, and just

> when I feel like I am getting going with the meds, I get sick again and

> have

> to stop....major bummer..

>

>

> I've just returned to full time work and a job filled with travel...since

> Enbrel and Remicade, I have found that I pick up any upper respiratory

> thing

> going around, and I get sick every time I fly on a plane.

>

> My regular doctor told me about an OTC solution to help...it is called

> alkalol and sells for only $3.50 or so (you usually have to special order

> it at

> the pharmacy even though its OTC). My doctor told me to mix it 50/50 with

> saline spray like Ocean Spray. She told me to gargle with it and spray it

> up my

> nose any time I sense I am getting sick, and before and after flying.

>

> This stuff has been like a miracle for me...the alkalol is made from

> camphor

> and eucalyptus I think, and with the saline it is a " mucus buster. " The

> doctor told me that bacteria needs mucus to grow in (lovely, huh?), so if

> you

> remove the mucus, then you can avoid some infections.

>

> For so little money and hassle, this is now one of my all time favorite

> remedies:-)

>

>

>

[Guest guest]

In a message dated 16/05/2006 20:22:33 GMT Daylight Time,

tiburonnn2001@... writes:

I am new to this site. Just happy to have found another one. I was

on psoriasis support but it is not working anymore for some reason.

Hi Crissy,

I'm sorry I've taken so long to say hello but I just wanted to welcome you to

the group. I hope things have improved for you dramatically since you posted

this. The Enbrel works wonders for a lot of people. I hope you are one of them.

Take care,