Re: new here but not new to RA

[Guest guest]

Nothing wrong with a little bribery, it works and you needed it to work! In the

real adult world it's called rewards, incentives, bonuses, commission, raises at

work! Same thing! I have a daycare so I tend to call it rewards (you know, if

you don't pick up the toys, you won't eat lunch!). Just kidding, I don't

withhold food. But I might withhold Spongebob Cereal for a snack and only offer

Cheerios instead. Gives them a choice on what they really want.

Becky

[ ] new here but not new to RA

Hi there. I was dx with RA at the age of 27 and have been living with

it for 8 years now--hard to believe! I was in remission for 2 years

thanks to Enbrel but docs had to take me off of it when I was dx with

MS in 2002. Slowly the RA came back and now it has taken over. I

can't go on any of the newer drugs like Remicade, Humira, Enbrel due

the MS (these drugs can cause MS to worsen). I was so thrilled to

become part of a clinical trial at Northwestern in Chicago for

Rituxan (approved lymphoma drug that can help RA). However I think

I'm part of the placebo group because I've gotten worse not better!

How frustrating. Thankfully at week 17 of study I can find out what

I'm on and request the Rituxan (in July).

My hands and feet are affected the worse right now. Have very limited

movement in shoulder (no cartilage left but too young for shoulder

replacement). My hands are so bad in the morning and I have a two

year old to run around after! He is 36 pounds so very hard to pick

up. Especially when he has temper tantrums about leaving the park and

goes flat out on the ground and kicks and screams if I pick him up--

AHHHHH!!!! Today I resorted to jelly beans to get him in the car--I

vowed I wouldn't bribe my children (but that was we didn't have

kids). WHat did I know??? He really is a sweetheart and kisses my

hands when I tell them they hurt :-)

i'm currently taking MTX, Celebrex and received infusion of trial

drug a month ago (but probably placebo).

Any other moms of toddlers with RA out there?? I could use some words

of encouragement

Thanks

Kirsten in Chicagoland

[Guest guest]

Hi,

I am Jacquie and I am forty years old. I have a beautiful 16 year old

daughter and never in the world thought that I would have any more kids since

I had her when I was only 25 weeks, I was 23 then and had not been dx yet with

RA. I was diagnosed at 33 with degenerative disc disease and RA. I met the

love of life 4 years ago, he also is severely disabled with degenerative disc

disease and Psoriasis Arthritis. Who could believe that we would have the most

wonderful three year old at this time in our lives. I hear you though, he

weighs 50 pounds and won't actually be 3 until May 16th, even despite being also

a

preemie! I now have SD as well as my husband. I guess I never thought of it as

bribery because 1 it is survival and 2 I worked as a teacher of emotionally

disabled children for 16 years. We called it positive reinforcement or behavior

management. Call it whatever you want, it is surviving as best we can and you

are helping your child choose between time out or rewards.

Hugs

Jacquie

[Guest guest]

Hi Kirsten

I want to welcome you to the group. I am so sorry for all the

problems you are having, what a struggle you are going though. I

have two daughters, 21 and my youngest is 9 so I don't have to pick

her up anymore. There are many in our group with young children, and

they can help you out. You are doing the best that you can, and I

think your doing a fine job. At that age it's hard for children to

understand, it will get better just hang in there, I promise. That

is so sweet that he kisses your hands, he already knows in his way.

We all bribe our kids, so don't worry. You take care Tawny

> Hi there. I was dx with RA at the age of 27 and have been living

with

> it for 8 years now--hard to believe! I was in remission for 2 years

> thanks to Enbrel but docs had to take me off of it when I was dx

with

> MS in 2002. Slowly the RA came back and now it has taken over. I

> can't go on any of the newer drugs like Remicade, Humira, Enbrel

due

> the MS (these drugs can cause MS to worsen). I was so thrilled to

> become part of a clinical trial at Northwestern in Chicago for

> Rituxan (approved lymphoma drug that can help RA). However I think

> I'm part of the placebo group because I've gotten worse not better!

> How frustrating. Thankfully at week 17 of study I can find out what

> I'm on and request the Rituxan (in July).

> My hands and feet are affected the worse right now. Have very

limited

> movement in shoulder (no cartilage left but too young for shoulder

> replacement). My hands are so bad in the morning and I have a two

> year old to run around after! He is 36 pounds so very hard to pick

> up. Especially when he has temper tantrums about leaving the park

and

> goes flat out on the ground and kicks and screams if I pick him up--

> AHHHHH!!!! Today I resorted to jelly beans to get him in the car--I

> vowed I wouldn't bribe my children (but that was we didn't have

> kids). WHat did I know??? He really is a sweetheart and kisses my

> hands when I tell them they hurt :-)

> i'm currently taking MTX, Celebrex and received infusion of trial

> drug a month ago (but probably placebo).

> Any other moms of toddlers with RA out there?? I could use some

words

> of encouragement

> Thanks

> Kirsten in Chicagoland

[Guest guest]

Hey, ! Welcome to the group. I am not as active as most

here, but I can really relate to your post. Not only do I also live

in the Chicago suburbs (and used to see Dr. Pope at NMH), but I am

30, and have two kids. One is 13 months and one turned three in

March. I was diagnosed a few months before trying to get pregnant

with Josh, my first. Wasn't on any meds at all until after I was

done having the second, , other than a steroid injection here

and there to help get me through. That was mostly my choice as I

didn't want the meds to interfere with the pregnancies or go through

breastmilk, and the doc said it was ok as long as they were close in

age so we could get on with treatment relatively quickly. I was

really bad sometimes, and not so bad other times. Right now I'm in

one of the biggest flares I've ever had. I used to be on

methotrexate and am now on Plaquenil. My hands are also the worst.

My kids are lighter than yours, (33 pounds and 25 pounds), but my

daughter has had a cataract removed from one eye. I have to do eye

drops twice a day and remove and insert a contact lens once a week,

or more often if she rubs them out. Is is extremely difficult to do

this, as I'm sure you can imagine. I think it would be ahrd enough

without having RA, but not having dexterity while poking around a 13

month old's eye is no fun. If you ever want to talk privately,

please email me. I don't always get to check the board, as I also

work full time. P.S. I also " reward/bribe " when necessary!!

> Hi there. I was dx with RA at the age of 27 and have been living

with

> it for 8 years now--hard to believe! I was in remission for 2 years

> thanks to Enbrel but docs had to take me off of it when I was dx

with

> MS in 2002. Slowly the RA came back and now it has taken over. I

> can't go on any of the newer drugs like Remicade, Humira, Enbrel

due

> the MS (these drugs can cause MS to worsen). I was so thrilled to

> become part of a clinical trial at Northwestern in Chicago for

> Rituxan (approved lymphoma drug that can help RA). However I think

> I'm part of the placebo group because I've gotten worse not better!

> How frustrating. Thankfully at week 17 of study I can find out what

> I'm on and request the Rituxan (in July).

> My hands and feet are affected the worse right now. Have very

limited

> movement in shoulder (no cartilage left but too young for shoulder

> replacement). My hands are so bad in the morning and I have a two

> year old to run around after! He is 36 pounds so very hard to pick

> up. Especially when he has temper tantrums about leaving the park

and

> goes flat out on the ground and kicks and screams if I pick him up--

> AHHHHH!!!! Today I resorted to jelly beans to get him in the car--I

> vowed I wouldn't bribe my children (but that was we didn't have

> kids). WHat did I know??? He really is a sweetheart and kisses my

> hands when I tell them they hurt :-)

> i'm currently taking MTX, Celebrex and received infusion of trial

> drug a month ago (but probably placebo).

> Any other moms of toddlers with RA out there?? I could use some

words

> of encouragement

> Thanks

> Kirsten in Chicagoland

[Guest guest]

Welcome, Kirsten! Sorry that you've had RA for so long and from such a

young age.

Did you have any MS-like symptoms before ever taking Enbrel (or any

family history of MS?)? I ask since there have been several cases of

new-onset MS associated with Enbrel use. Have you MS symptoms improved

at all since discontinuing Enbrel?

I think Rituxan (rituximab) has great promise as an RA therapy. Are they

using any other drugs as part of the protocol?

Have you seen or would you consider seeing a team of specialists at

either Mayo, s Hopkins, or the Hospital for Special Surgery about

your shoulder? You are very young, but your quality of life is very

important, too.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] new here but not new to RA

> Hi there. I was dx with RA at the age of 27 and have been living with

> it for 8 years now--hard to believe! I was in remission for 2 years

> thanks to Enbrel but docs had to take me off of it when I was dx with

> MS in 2002. Slowly the RA came back and now it has taken over. I

> can't go on any of the newer drugs like Remicade, Humira, Enbrel due

> the MS (these drugs can cause MS to worsen). I was so thrilled to

> become part of a clinical trial at Northwestern in Chicago for

> Rituxan (approved lymphoma drug that can help RA). However I think

> I'm part of the placebo group because I've gotten worse not better!

> How frustrating. Thankfully at week 17 of study I can find out what

> I'm on and request the Rituxan (in July).

> My hands and feet are affected the worse right now. Have very limited

> movement in shoulder (no cartilage left but too young for shoulder

> replacement). My hands are so bad in the morning and I have a two

> year old to run around after! He is 36 pounds so very hard to pick

> up. Especially when he has temper tantrums about leaving the park and

> goes flat out on the ground and kicks and screams if I pick him up--

> AHHHHH!!!! Today I resorted to jelly beans to get him in the car--I

> vowed I wouldn't bribe my children (but that was we didn't have

> kids). WHat did I know??? He really is a sweetheart and kisses my

> hands when I tell them they hurt :-)

> i'm currently taking MTX, Celebrex and received infusion of trial

> drug a month ago (but probably placebo).

> Any other moms of toddlers with RA out there?? I could use some words

> of encouragement

> Thanks

> Kirsten in Chicagoland