Re: New Member - I need help with symptoms!!!

Posted December 11, 2006 · December 11, 2006

Loise, I admire all that you are doing for your daughter. I know

it's exhausting. Having her in the hospital can take it all out of

you and then to keep going and get her to the other doctors after her

hospital release is a great feat. My daughter has special needs and

was hospitalized twice this year so I know some of what you are

experiencing. I hate to hear of young people diagnosed with any

disease. I do believe that there is so much progress right now with

our disease and a 3 new meds that I know of on the horizon...within

the next 2 years so........there is hope. I was on Enbrel with great

success for a short while but had to get off of it. It actually made

me nails rock hard and marvelous. I was able to run up and down

stairs like I could 5 years ago. And yes....you can be in constant

hip pain from PA. Sometimes it hurts me to wear jeans too. If your

daughter has seen the posters in the Rheumy's offices or online, it

might scare her to death but reading the post on this site may give

her some relief to know that it's not a given that your fingers will

end up mangled. We have a few on here with that form of PA (there are

five forms of the disease if I'm not mistaken). Keep doing what you

are doing. Listen to each opinion and then be a Mom and listen to

your gut. My daughter's condition is forever morphing on me and I'm

constantly amazed at the acuracy of my maternal intincts. There

really is something to it. Whether we carried our children in our

womb or aquired them through other acts of love, Mom's just have this

unworldly connection to what our kids need. Use it and trust it when

you need to make a decision. I also want to tell you that MANY of us

have been hospitalized and then released only to have the doctors say

they have found nothing. This disease is illusive. Most of us can

trace our symptoms to our youth. So if your daughter is getting

diagnosed now, she will have a shot at a better future. Seems like

she already has the most important thing on her side...YOU. Praying

that the MRI comes back negative (I had a negative one for MS in Oct)

and praying for continued strength and fortitude for you, your

daughter and your family. I am learning some amazing things about

children with with disease and disability. Feel free to contact me

off group if you like. I can share some coping techniques that are

helpful to my 12 year old and I. She has taught me so much. I'm happy

to share the wealth. You can reach me at itsbetsy@.... Love

Betz

Posted December 11, 2006 · December 11, 2006

louise, this is interesting. i have sensitivity. my 23 year old son has been

staying with us for the last month and everytime he walks by he pokes of pinches

or maybe a bear hug. this is great and im glad he loves me but.... it hurts. he

can just poke my arm and i cry out. and i bruise! he doesnt understand it but he

treats me a little gentler now ). so i guess at least with me, the sensitivity

is greater. i dont know the reason it just is. the progression of your daughter

sounds very much like what i went through. so i hope you get your answers soon.

(i also had such bad pain in my legs, went through many PAINFULL TESTS. still

had no answers. but im ok now!

casey

My 14-yr old daughter was diagnosed with PA on 11/15. She was

hospitalized in the end of October with extreme hip pain that

extended down into her foot. Her leg was sensitive to the touch.

Her knee was swollen and the entire leg was off color.

Rheumatologist - He is positive that she has PA. He put her on

Enbrel. I agreed to keep her on Enbrel for 3 months while we have

the Neuro tests done.

My daughter does have P on her scalp.

My brother has PA and I am familiar with the symptoms and what her

fingers and toes may look like if she does have PA.

My questions are:

1. Does anyone in the group have skin sensitivity?

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Posted December 11, 2006 · December 11, 2006

My questions are:

1. Does anyone in the group have skin sensitivity?

2. Is it common for the hip pain to be constant?

3. With the Enbrel, can you still have a flare-up?

4. Have any of you been on Enbrel and your nails got worse? She

nails are fine now and she is terrified that they will become

misfigured. I believe the Enbrel is helping somewhat. She can go a

few hours without the crutches. But she is dying to get rid of

them. She has a nasty rash under each arm.

Sorry your poor dd is having so much pain and misery! Hopefully she

will feel better and better on the Enbrel. To answer your questions

from my personal experience:

1.) When I am having a flare, EVERYTHING hurts, whether it be

joints, skin, muscles, tendons or what-have-you.

2.) My hip pain did not start out constant. Initially it was

intermittent sharp pain that would occur with walking (a feeling

like the hip joint was sliding out of its socket, or going to snap

right in half) and would resolve with rest....but it continued to

get worse over time. By the time I finally had my hip replaced in

June of this year, the pain was constant and excruciating, even at

rest, and I was limping VERY badly. My best guess....from the time

the intermittent pains started happening until June when the hip was

replaced.....about 15-18 years elapsed, and I was only diagnosed and

started treatment for the PA and Sjogrens syndrome during the past 4-

5 years.

3.) When I first started the Enbrel, I didn't think I noticed much

improvement.....until I had to go off it and the Methotrexate for

nearly two months when I had my hip replaced. Believe me, during

that two months period, I realized EXACTLY how much the Enbrel and

Methotrexate had been helping me previously! Couldn't WAIT to go

back on it. I find that I do still experience flares on my

treatment, but they are less severe and not as lengthy.

4.) My nails got worse during the 2 months period I had to be off

the meds for surgery. They have not gotten any worse since I

restarted the meds, but they have not gotten better either.

One note about the crutches and arm rash: she should NOT be leaning

on the crutches so that they are jammed into the armpit to CAUSE

rash or discomfort. Doesn't sound like they are properly fitted for

her if that's the case. There should be at least an inch gap or so

between the top of the crutch and her armpit. When she walks with

the crutches, her elbows should be only very slightly bent, and her

weight should primarily be falling on her wrists and balls of her

palms as she grips them; the crutches should NOT be digging up into

her armpits or causing any pressure there whatsoever. I had to use

crutches for a couple of weeks postop, (progressed from non-weight

bearing to weight bearing) and that is what my physical therapist

told me.

Blessings and wishes for good health to you and dd!

Posted December 13, 2006 · December 13, 2006

your daughter may have lupus . I have been told that I had psoriatic

arthritis for 18 years . too much to tell . thought I had ms . two neurologists

were

confused and puzzled and came to no conclusion but have recently had tests .

NOW the doctors say it is rheumatoid arthritis and LUPUs but are not

obligating themselves [best doctors in boston ] and are quietly saying very

little .

I have had 3 hip replacements and other stuff. Since your not supposed to go

in sun then 18 years of sun because I had PSORIATIC ARTRITIS and no w have

skin cancer on my neck That is another whole story . Anyway make sure they

keep testing for lupus . as far as rash goes . switch to dove soap for

sensitive skin . make sure it is the kind that says for sensitive skin . Do not

use

the liquid soap . ITs different . The doctor can prescribe dovenex to get rid

of that rash . also get an unscented deodorant . Dove unscented doedorant

is good . I have also used form of vaseline . [been given hydrolatem .] it is

available over the counter and is a hydrolated [has water in it]. It comes

in a big tub for 11 dollars. It is callled HYDROLATUM . PETROLEUM VASELINE.You

can buy online just type in name. It is safe for diabetics and is very

soothing . It is a little messy so use sparingly . If u use it then wait about

15

minutes for it to absorb before you get dressed . It can be a little messy so

dont use a lot. GReat for diabetics and dry skin . IT helped my dry skin a

lot . After i take a shower I towel dry my skin and then put on sparingly .

wait 15 min. and get dressed . Also found its great for my feet. I can't reach

t my feet so I put it on a paper plate and put my feet on plate and swish my

feet around and then put on my socks . I have trouble bending . cathy from

ma

Posted December 13, 2006 · December 13, 2006

Oh Yeah and I have been on enbrel for for almost 8 years and it doesn't

always clear up skin and you can have aflare while on it and I guess it works

for

everything . Anyway your daughter can take msm capsules to help her nails

and skin . cathy from ma

Posted December 13, 2006 · December 13, 2006

I noticed in your post that your daughter has a rash under her arms, that is

usually the first sign that I am in for trouble. I have PA, through I was

recently diagnosed (within the last year or so) I have been having trouble for a

long time. I hope your daughter feels better soon, currently I do not and have

not had hip trouble. I am on humira and methotrexate, and I have expericed much

relief from both.

[ ] New Member - I need help with symptoms!!!

My 14-yr old daughter was diagnosed with PA on 11/15. She was

hospitalized in the end of October with extreme hip pain that

extended down into her foot. Her leg was sensitive to the touch.

Her knee was swollen and the entire leg was off color.

After many tests in the hospital and nothing being found, she was

released. She has been on crutches since then. Her hip continues

to hurt and you cannot even brush up against the leg. She cries out

in pain. She cannot wear jeans because the weight of the pants

makes her hip hurt.

After she was released from the hospital, I took her to the

following doctors:

Vascular Surgeon - he could not find anything wrong.

Orthopedic Surgeon - He feels she has RSD, but referred me to a

neurologist and a Rhuematologist.

Neurologist - Feels she may have MS. She had some tests last week

and we are going for an MRI tomorrow.

Rheumatologist - He is positive that she has PA. He put her on

Enbrel. I agreed to keep her on Enbrel for 3 months while we have

the Neuro tests done.

My daughter does have P on her scalp.

My brother has PA and I am familiar with the symptoms and what her

fingers and toes may look like if she does have PA.

My questions are:

1. Does anyone in the group have skin sensitivity?

2. Is it common for the hip pain to be constant?

3. With the Enbrel, can you still have a flare-up?

4. Have any of you been on Enbrel and your nails got worse? She

nails are fine now and she is terrified that they will become

misfigured.

I believe the Enbrel is helping somewhat. She can go a few hours

without the crutches. But she is dying to get rid of them. She has

a nasty rash under each arm.

Sorry of the winded message, but I really need to hear from someone

who can answer my questions.

Thank you,

Louise

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Posted January 31, 2007 · January 31, 2007

In a message dated 11/12/2006 12:25:42 GMT Standard Time, lyaskulka@...

writes:

My 14-yr old daughter was diagnosed with PA on 11/15. She was

hospitalized in the end of October with extreme hip pain that

extended down into her foot. Her leg was sensitive to the touch.

Her knee was swollen and the entire leg was off color.

Hi Louise,

Welcome to the group.....................a very late welcome. I hope by now

you got your questions answered. If not, let me know and I will have a go but

I'm sure that someone will have responded.

I'm sorry that it looks like you daughter may have this disease but glad that

you found us.

I'm just reading through your subsequent posts and see that she has improved

on the Enbrel. That is great to hear. I hope she can stay on it beyond the

three months if it is working for her.

Take care,

Posted January 31, 2007 · January 31, 2007

Hi ,

Thanks for the warm welcome. na's last blood tests revealed

that she definitely has PA. The Enbrel is working great, but she is

having issues with having to get an injection every week. She is

also have a very hard time accepting this disease, so tomorrow I am

seeing a psychologist for a consult before na sees her for the

first time. na is now out of school and I think she is really

missing it, although she says she isn't.

This group has been great, and I am very happy that na found it

on . She is going to try and connect with another teen whose

mom is in this group. na needs to talk to someone her own age

and realize that she is not alone.

We are a 9/11 family (my husband lost his mom) and na has been

through a lot in the last few years. Now she is dealt with another

blow and it is a little too much for her to deal with right now.

She is making her confirmation this March and she is really

questioning God. Last night she had a hard time giving herself the

Enbrel and she wound up misfiring it. That set her off and she

cried for about 2 hours. Questioning everything " bad " that has

happened to her. Why did her Grandma Myrna has to die on 9/11, why

is her Dad disabled, why did 9/11 have to happen and I left my job

in the city and now make a lot less money, why does she have to be

different than her friends and have PA, when will the pain go away,

when will she be able to wear jeans, shoes or sneakers again....

the list just went on and on.

I just let her rant. Had no idea what to say to her. I tried to

speak to her and explain that she is responding to the meds, so

things are looking up, but being a teenager, she thinks I don't know

what I am talking about. She is a great kid and I will do

everything I possibly can to make her well and happy.

Thanks for letting me ramble,

Louise

>

> In a message dated 11/12/2006 12:25:42 GMT Standard Time,

lyaskulka@...

> writes:

>

> My 14-yr old daughter was diagnosed with PA on 11/15. She was

> hospitalized in the end of October with extreme hip pain that

> extended down into her foot. Her leg was sensitive to the touch.

> Her knee was swollen and the entire leg was off color.

>

> Hi Louise,

>

> Welcome to the group.....................a very late welcome. I

hope by now

> you got your questions answered. If not, let me know and I will

have a go but

> I'm sure that someone will have responded.

> I'm sorry that it looks like you daughter may have this disease

but glad that

> you found us.

>

> I'm just reading through your subsequent posts and see that she

has improved

> on the Enbrel. That is great to hear. I hope she can stay on it

beyond the

> three months if it is working for her.

>

> Take care,

>

Posted January 31, 2007 · January 31, 2007

Louise,

I am sooo sorry for what you and na are going thru..I worked in the

mental field for about 15 years..I worked with adolescents part of that time..I

believe she needs to find her strengths and hopefully the therapist can help her

find them..It is hard for an adult to accept this disease must less a child..My

daughter too has symptoms of pa..she already has p. She is also 14..I could get

her to send na a private email if you are comfortable with that..Her name

is . 's legs get discolored and her ankles hurt her..She wants

to play sports but has not been able to the last 3 years..She also has problems

with her knees but no pain or swelling in them yet. The dr's keep saying she is

having growing pains in her ankles but I am concerned because I have this

disease..I dont mean to be pessimistic but I am looking for one tiny little

thing that might convince the Dr's she may have beginning stages..She takes

motrin and it seems to help most of the time

and uses a heating pad.

I am so sorry I got off my daughter..back to na..She is gonna need a

little bit of time and just love her like you never have before..I will pray for

her..I think it is normal for her to be angry at God right now especially if she

is not mature spiritually and most 14 years olds arent..I dont know your beliefs

but we are christian and does Bible study geared toward teens in

difficult circumstances..She really likes doing those..I wish I had a magic

answer for you I really do..My heart goes out to you..I am so sorry that you all

have been thru so much with 9/11 and now this...I cant imagine how you must

feel..I am praying right now for comfort for you and your whole family..It is so

senseless why this had to happen..

You hang in there and we are here for you and na!! Give her a big hug

for me!

Vickey

Louise <lyaskulka@...> wrote: