Re: Pre-conception, Pregnancy & Parenting

[Guest guest]

I noticed there was not much information either (currently living through a

post baby flare up).... I wish there was more information. It would be helpful

to know there are others who are going through the same thing. I am also

concern incase I want another child (undecided as of yet) what is going to

happen with the different medications, with the post baby flare up, etc

again.......what is safe what is the right way to go about preconception.

hope you can find some information, and hope you share it with us !!!

amber

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[Guest guest]

Deneen I was pain free while pregnant, I had periods my feet hurt but

nothing like the POST flare ups I have gotten. I did take stuff last time while

pregnant but it was just pain killers (t3) they would not give me anything else

but I had not been dx with anything either. (diagnosis is STILL pending now)

amber

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[Guest guest]

Hi, Susie!

First off, I must give kudos to you for going through a pregnancy while

dealing with such a painful and chronic disease. That is a challenge not all

can, or want to experience. Although I am not pregnant, me and my boyfriend

of two years have been discussing the issue of having kids together. I have

one soon-to-be 5 year old and he has none. I am 25 and he is 30. He is such

a great supporter of my RA and I truly adore him for that, however I know

that he is dying to have kids and I wouldn't mind having more either.

My problem? I was taking methotrexate for almost 2 years and I just went to

the doctor Monday and he switched me to sulfalazine (or however you spell

it! Lol). We still have to wait for the three month period to get the

methotrexate out of my system, so July we are going to try. I'm scared and

nervous because I am not sure if these meds will be as effective as the

methotrexate. Is this what you took when you were pregnant? If so, was it

effective?

Any advice from anyone would be greatly appreciated! Thanks!

~Deneen

_____

From: [mailto: ] On

Behalf Of msuzie74

Sent: Friday, April 04, 2008 4:19 AM

Subject: [ ] Pre-conception, Pregnancy & Parenting

Hi everyone,

I haven't written for a while as have been busy with my new baby who

is now almost a year old.

Through this process of having a baby while living with chronic RA, I

have found very little information available to parents as to how to

cope with both the physical and emotional issues associated with

coming off medications in order to safely fall pregnant, pregnancy

itself, post birth flares, breastfeeding and then caring for a baby

while dealing with pain and fatigue.

Therefore, I have decided to conduct some research myself, looking at

these issues. It is totally confidential and private research. I

have no funding and am not linked to any educational institution. I

am just a concerned mum and health consumer who would love to learn

of your experiences and coping strategies in an attempt to help

others going through the same or similar issues.

If you have experienced any challenges with the above issues, your

experience could really help others. I would love to hear from you

and I can tell you more about my research.

You can contact me at my email address above.

Thanks

suzie

[Guest guest]

I have had 5 pregnancy and had bad pain with one......it was toward the end

and it was my first real flare up, first time this stuff hit me hard. it was

awful cause while I was pregnant the doctors did not want to give me any meds

at all. after I had her (my 3rd child) it got worse.....severely worse. I

would cry day and night, could not sleep, could not eat, I just wanted to fade

away somewhere........it finally resolved after weeks.....I had another child

NO problems......... now I had yet another child........I was fine during

pregnancy but about 2 weeks after delivery I started with symptoms, I would say

rapid onset.....and I have been miserable since, until the doctor put me on

lyrica, now I can manage through a day but I still am miserable. I have my

rheum doc appt on the 11th so I hope we can make way there. I know after my 3rd

child, I was scared to get pregnant again, thinking it would reoccur each

time.......but it didn't. Let me also say with my 3rd child I was EXTREMELY

sick

while pregnant, I lost over 50 pounds WHILE pregnant......I was miserable

from that (vomiting hourly, in and out of the hospital for dehydration,

etc)......I had a shyty doctor that was worthless......I am thinking the severe

sickness, weight loss, vit loss, etc caused my onset of a flare up......

anyway I am rambling.......

amber

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[Guest guest]

Wow. That's good to now that in most cases there is no pain during

pregnancies. Are the post flare-ups real bad? Does it just hit you out of

nowhere? This is what makes me nervous. See, I have RA REAL bad. I used to

take 7 methotrexate pills each week. My boyfriend says that he wants me to

stay home while pregnant and relax, but I don't think sitting down will help

much (we all know that the joints lock on you after continued periods of

sitting).

Question... do you (or anybody for that matter) experience your joints

'popping' when you move around?! OMG, I hate this! I can be like sitting

down doing schoolwork for my classes, and when I move like 15 minutes later,

my bones make this LOUD popping sound! This happens frequently with me.

Sometimes my leg locks on me and its almost like a charlie horse is in my

leg. Man...the things we go through!

~Deneen

_____

From: [mailto: ] On

Behalf Of ambermich@...

Sent: Friday, April 04, 2008 10:24 AM

Subject: Re: [ ] Pre-conception, Pregnancy & Parenting

Deneen I was pain free while pregnant, I had periods my feet hurt but

nothing like the POST flare ups I have gotten. I did take stuff last time

while

pregnant but it was just pain killers (t3) they would not give me anything

else

but I had not been dx with anything either. (diagnosis is STILL pending now)

amber

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.

<http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016>

aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Hi Suzie.

Congratulations on your baby and hooray for birthday #1!

OTIS at the University of California has a lot to offer women who are planning

pregnancy. They do counseling over the phone re: medication safety and they

serve as a clearing house of research data on RA and pregnancy. Pregnant women

with RA are encouraged to participate in their research.

http://www.otispregnancy.org/

The group is probably growing tired of my soapbox re: pregnancy and RA. I'm 29

weeks today, and I've stayed on my medicines throughout this pregnancy,

believing that inflammation isn't good for me, nor is it good for the baby. I

also plan to breastfeed on medicine (Enbrel + pred). I hope to be able to ward

off a post partum flare through aggressive disease management. RA isn't going

to get in the way if I can help it.

Cheers,

Kate F

[ ] Pre-conception, Pregnancy & Parenting

Hi everyone,

I haven't written for a while as have been busy with my new baby who

is now almost a year old.

Through this process of having a baby while living with chronic RA, I

have found very little information available to parents as to how to

cope with both the physical and emotional issues associated with

coming off medications in order to safely fall pregnant, pregnancy

itself, post birth flares, breastfeeding and then caring for a baby

while dealing with pain and fatigue.

Therefore, I have decided to conduct some research myself, looking at

these issues. It is totally confidential and private research. I

have no funding and am not linked to any educational institution. I

am just a concerned mum and health consumer who would love to learn

of your experiences and coping strategies in an attempt to help

others going through the same or similar issues.

If you have experienced any challenges with the above issues, your

experience could really help others. I would love to hear from you

and I can tell you more about my research.

You can contact me at my email address above.

Thanks

suzie

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

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[Guest guest]

congrats on all the babies coming.......I am 7 weeks post partum and know

how wonderful having a new baby is but also the fears of the flare ups......

congrats to you all !!

amber

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Nope! I'm not tired of hearing what you have to say about pregnancy and RA,

Kate.

Also, OTIS is doing such important work that I'm happy you mention it often.

Not an MD

> Re: [ ] Pre-conception, Pregnancy & Parenting

>

> Hi Suzie.

>

> Congratulations on your baby and hooray for birthday #1!

>

> OTIS at the University of California has a lot to offer women who are

planning

> pregnancy. They do counseling over the phone re: medication safety and

they serve

> as a clearing house of research data on RA and pregnancy. Pregnant women

with RA

> are encouraged to participate in their research.

> http://www.otispregnancy.org/

>

> The group is probably growing tired of my soapbox re: pregnancy and RA.

I'm 29

> weeks today, and I've stayed on my medicines throughout this pregnancy,

believing

> that inflammation isn't good for me, nor is it good for the baby. I also

plan to

> breastfeed on medicine (Enbrel + pred). I hope to be able to ward off a

post partum

> flare through aggressive disease management. RA isn't going to get in the

way if I

> can help it.

>

> Cheers,

> Kate F

[Guest guest]

Hi Kate!

I always love your posts and learn so much from them!

You are always very courageous and supportive. I am

never tired of hearing about RA and the pregnancy! You

give great inspiration to those who have not gone

through one that may want to! I'm very excited for

you!

--- Fair <kalfoley@...> wrote:

> Hi Suzie.

>

> Congratulations on your baby and hooray for birthday

> #1!

>

> OTIS at the University of California has a lot to

> offer women who are planning pregnancy. They do

> counseling over the phone re: medication safety and

> they serve as a clearing house of research data on

> RA and pregnancy. Pregnant women with RA are

> encouraged to participate in their research.

> http://www.otispregnancy.org/

>

> The group is probably growing tired of my soapbox

> re: pregnancy and RA. I'm 29 weeks today, and I've

> stayed on my medicines throughout this pregnancy,

> believing that inflammation isn't good for me, nor

> is it good for the baby. I also plan to breastfeed

> on medicine (Enbrel + pred). I hope to be able to

> ward off a post partum flare through aggressive

> disease management. RA isn't going to get in the

> way if I can help it.

>

> Cheers,

> Kate F

>

>

>

>

> [ ] Pre-conception, Pregnancy &

> Parenting

>

> Hi everyone,

>

> I haven't written for a while as have been busy with

> my new baby who

> is now almost a year old.

>

> Through this process of having a baby while living

> with chronic RA, I

> have found very little information available to

> parents as to how to

> cope with both the physical and emotional issues

> associated with

> coming off medications in order to safely fall

> pregnant, pregnancy

> itself, post birth flares, breastfeeding and then

> caring for a baby

> while dealing with pain and fatigue.

>

> Therefore, I have decided to conduct some research

> myself, looking at

> these issues. It is totally confidential and private

> research. I

> have no funding and am not linked to any educational

> institution. I

> am just a concerned mum and health consumer who

> would love to learn

> of your experiences and coping strategies in an

> attempt to help

> others going through the same or similar issues.

>

> If you have experienced any challenges with the

> above issues, your

> experience could really help others. I would love to

> hear from you

> and I can tell you more about my research.

>

> You can contact me at my email address above.

>

> Thanks

> suzie

>

>

>

>

>

>

>

________________________________________________________________________________\

____

> You rock. That's why Blockbuster's offering you one

> month of Blockbuster Total Access, No Cost.

> http://tc.deals./tc/blockbuster/text5.com

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals./tc/blockbuster/text5.com

[Guest guest]

Thanks for your kind feedback. I really love our group and I get so

much support from all of you. I know that I sound a bit peppy at times, " Rah

rah for Enbrel " etc, but I know how depressed flares can make us. I'm bound and

determined not to give into this crummy disease that killed my grandmother and

favorite prof from college. I figure having babies and living life to the

fullest is the best way to give RA the finger, so to speak However, I know

not everyone is able to have the luck I've had in responding to an antiTNF (or

worse, can't afford an antiTNF that could potentially really help them) and for

that I offer lots of gentle hugs and an ear when you need one.

In other OT news, I'm totally in denial that I'm having this baby in 8 weeks. I

haven't even unpacked our baby gear yet! If anyone has name suggestions, I'm

all ears. Our son's name is Charlie and we really like classic, American names.

I'll keep everyone posted on the details, and try to figure out how to send

pictures when the baby comes. I'm keeping my rheumatologists from Washington DC

in the loop too. I tell them this is their rheumatological grandbaby.

Hugs everyone and enjoy the weekend, Kate F

[ ] Pre-conception, Pregnancy &

> Parenting

>

> Hi everyone,

>

> I haven't written for a while as have been busy with

> my new baby who

> is now almost a year old.

>

> Through this process of having a baby while living

> with chronic RA, I

> have found very little information available to

> parents as to how to

> cope with both the physical and emotional issues

> associated with

> coming off medications in order to safely fall

> pregnant, pregnancy

> itself, post birth flares, breastfeeding and then

> caring for a baby

> while dealing with pain and fatigue.

>

> Therefore, I have decided to conduct some research

> myself, looking at

> these issues. It is totally confidential and private

> research. I

> have no funding and am not linked to any educational

> institution. I

> am just a concerned mum and health consumer who

> would love to learn

> of your experiences and coping strategies in an

> attempt to help

> others going through the same or similar issues.

>

> If you have experienced any challenges with the

> above issues, your

> experience could really help others. I would love to

> hear from you

> and I can tell you more about my research.

>

> You can contact me at my email address above.

>

> Thanks

> suzie

>

>

>

>

>

>

>

____________ _________ _________ _________ _________ _________ _

> You rock. That's why Blockbuster' s offering you one

> month of Blockbuster Total Access, No Cost.

> http://tc.deals. / tc/blockbuster/ text5.com

>

> [Non-text portions of this message have been

> removed]

>

>

____________ _________ _________ _________ _________ _________ _

You rock. That's why Blockbuster' s offering you one month of Blockbuster Total

Access, No Cost.

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[Guest guest]

Amber, remember to order take out, let the house go to he*^ and accept any and

all help! I got this link from my prenatal yoga instructor, apparently you can

join for $45/year and for 2 weeks they will bring meals to your house every

other day, www.mothersandmore.org

and do sleep when the bebe sleeps. I never listened to this and I was fit to be

tied within the first few months!

Hugs, Kate

Re: [ ] Pre-conception, Pregnancy & Parenting

congrats on all the babies coming...... .I am 7 weeks post

partum and know

how wonderful having a new baby is but also the fears of the flare ups......

congrats to you all !!

amber

************ **Planning your summer road trip? Check out AOL Travel Guides.

(http://travel. aol.com/travel- guide/united- states?ncid= aoltrv0003000000

0016)

[Guest guest]

hi suzie, im 38 yrs old & have had ra since i was 5yrs.old. im married to a

wonderful man & have an 11yr.old daughter,Alyssa.. when i was 26 yrs of age i

became pregnant. to my dismay i was full of uncertain emotions because i was

told by drs. that i would not be able to have children.. i did not know what or

how to feel.. should i be happy,sad or both!! i knew though whatever happens i

would love & care for my daughter to the best of my ability,pain or no pain...

the drs. did take me off all my meds except i was on prednisone for a short time

during my pregnancy... during the 9 months of my pregnancy, i went to college,

cared for my husband & i felt like i have never felt before.. that is i felt

GREAT & PAIN FREE! my obgyn had told me that women who have ra like are in

remission while pregnant.. i did not BELIEVE him, but its TRUE i think anyway!!

HOWEVER when i gave birth, i was in severe pain & had to get back on all my

meds!!!! my daughter has grown

into a beautiful,smart,compassionate,loving,kind,considerate young lil lady!!!

i would not have done anything different if i could do it all again but i can no

longer have children due to severe endometreosis... thats o.k. though cuz god

blessed me with one i thought i would never have!!! i thought i would never know

what motherhood was all about but i do & its unconditional love all the way,

PAIN OR NO PAIN ALL THE WAY AWESOME!! I love being a mommy & wife no matter what

my condition is... just to let you know suzie besides my severe ra, i also have

osteo & neuropathy,but i was dealt that hand & im going to play till im out.....

good luck with your research & i hope you find what your looking for in this ra

group.. its HELPED me alot!!! god bless, melyndagamez 4/4/08 9:50p.m. central

time

[ ] Pre-conception, Pregnancy & Parenting

Hi everyone,

I haven't written for a while as have been busy with my new baby who

is now almost a year old.

Through this process of having a baby while living with chronic RA, I

have found very little information available to parents as to how to

cope with both the physical and emotional issues associated with

coming off medications in order to safely fall pregnant, pregnancy

itself, post birth flares, breastfeeding and then caring for a baby

while dealing with pain and fatigue.

Therefore, I have decided to conduct some research myself, looking at

these issues. It is totally confidential and private research. I

have no funding and am not linked to any educational institution. I

am just a concerned mum and health consumer who would love to learn

of your experiences and coping strategies in an attempt to help

others going through the same or similar issues.

If you have experienced any challenges with the above issues, your

experience could really help others. I would love to hear from you

and I can tell you more about my research.

You can contact me at my email address above.

Thanks

suzie

------------------------------------

[Guest guest]

Kate, u go to a rheum IN DC? I am going to see one in NO VA on Friday,

wondering if it is the same one?

amber

**************Planning your summer road trip? Check out AOL Travel Guides.

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[Guest guest]

lol Kate sleep when the baby does....i got to find someone to keep up with

my other 4 kids then. LOL. I do try to rest a lot, take a nap when the 2 little

ones do.....it is rare and i am going back to work on monday, pray for me

amber

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[Guest guest]

Thank you so much everyone for responding to my post so positively.

It is amazing how little information is out there about women and

pregnancy and arthritis. It is so great to hear other people's

experiences and hopefully our sharing can assist others who plan on

starting or expanding their family alongside the management of their

RA.

I spent 6 months detoxing off methotrexate, humira, prednisolone and

celebrex before falling pregnant. It was a really hard process. I

then started back on prednisolone and celebrex when my son was only a

few weeks old so that I could care for him - my post birth flare was

very bad and started 7 days after his birth. I breastfed for 8

months and have now just recommenced methotrexate and humira to try

and get my disease back under control - have been flaring for 10

months now.

Your stories are really inspiring, thanks for sharing. And if you

are interested in sharing more, please email me to be involved in my

research on this issue.

By the way, I am in Australia, so any international responses are

particularly interesting to me. I understand many of you are in the

USA.

Suzie

>

> Hi everyone,

>

> I haven't written for a while as have been busy with my new baby

who

> is now almost a year old.

>

> Through this process of having a baby while living with chronic RA,

I

> have found very little information available to parents as to how

to

> cope with both the physical and emotional issues associated with

> coming off medications in order to safely fall pregnant, pregnancy

> itself, post birth flares, breastfeeding and then caring for a baby

> while dealing with pain and fatigue.

>

> Therefore, I have decided to conduct some research myself, looking

at

> these issues. It is totally confidential and private research. I

> have no funding and am not linked to any educational institution.

I

> am just a concerned mum and health consumer who would love to learn

> of your experiences and coping strategies in an attempt to help

> others going through the same or similar issues.

>

> If you have experienced any challenges with the above issues, your

> experience could really help others. I would love to hear from you

> and I can tell you more about my research.

>

> You can contact me at my email address above.

>

> Thanks

> suzie

>

[Guest guest]

Kate, I am going to Dr utotola (sp?) in Leesburg. It will be my first visit

on Friday, I hope it goes well and I can make progress on getting better

(well feeling better). if she is not what I need I will definitely consider the

gw ones. I have to have someone who is aggressive with my treatment. I want

joint damage to be as slow as possible after all I got to keep up with these 5

kids, LOL

wish me luck

amber

**************Planning your summer road trip? Check out AOL Travel Guides.

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[Guest guest]

Hi Amber, where in NoVA? We just moved to IL from McLean. I was seen at

Rockville Internal Medicine initially by a new rheumatologist, Dr. Maniar. I

liked her as a person, but she had a hard time spelling out a coherent treatment

plan. Her supervisor is Dr. Fang, but I never saw her. I then saw Dr. Melton

who was in Chevy Chase, but he has since moved to SE Va. My super favorite

rheumatologists are at GW (www.gwdocs.com). I saw Dr. Nayyar under the

supervison of Dr. Katz. I thought they were terrific. Hopefully your rheum

will work out - where abouts are you going? If you need another opinion,

consider GW, I was tremendously happy with them. The metro is the easiest way

to get there, but it's do-able to drive too, parking is just $15.

Best, Kate F

Re: [ ] Pre-conception, Pregnancy & Parenting

Kate, u go to a rheum IN DC? I am going to see one in NO VA on Friday,

wondering if it is the same one?

amber

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[Guest guest]

Kate,

In honor of your DC rheumatologists: or Georgina Washington. Martha

Washington?

Not an MD

> Re: [ ] Pre-conception, Pregnancy & Parenting

>

> Thanks for your kind feedback. I really love our group and I

get so much

> support from all of you. I know that I sound a bit peppy at times, " Rah

rah for

> Enbrel " etc, but I know how depressed flares can make us. I'm bound and

> determined not to give into this crummy disease that killed my grandmother

and

> favorite prof from college. I figure having babies and living life to the

fullest is the

> best way to give RA the finger, so to speak However, I know not

everyone is able

> to have the luck I've had in responding to an antiTNF (or worse, can't

afford an

> antiTNF that could potentially really help them) and for that I offer lots

of gentle hugs

> and an ear when you need one.

>

> In other OT news, I'm totally in denial that I'm having this baby in 8

weeks. I haven't

> even unpacked our baby gear yet! If anyone has name suggestions, I'm all

ears. Our

> son's name is Charlie and we really like classic, American names. I'll

keep everyone

> posted on the details, and try to figure out how to send pictures when the

baby

> comes. I'm keeping my rheumatologists from Washington DC in the loop too.

I tell

> them this is their rheumatological grandbaby.

>

> Hugs everyone and enjoy the weekend, Kate F

[Guest guest]

That's hillarious, . I'm really a shameless shill for both GW and Enbrel,

huh?

It was always *such* a pita to get downtown to GW, but you know how devoted I

was to them. Once I didn't get to see my fellow and had to see some random

resident. I was most hostile, thinking, listen, I don't brave DC roundabouts to

see some resident who doesn't know my history . . . . Oh, and when I had the

weird neuro sx and they worried I was getting that MS-like syndrome from my

antiTNF, I had to see a neurologist there and she didn't even know what Enbrel

was or why it might case neurological problems. Those were certainly suboptimal

visits!!

Re: [ ] Pre-conception, Pregnancy & Parenting

>

> Thanks for your kind feedback. I really love our group and I

get so much

> support from all of you. I know that I sound a bit peppy at times, " Rah

rah for

> Enbrel " etc, but I know how depressed flares can make us. I'm bound and

> determined not to give into this crummy disease that killed my grandmother

and

> favorite prof from college. I figure having babies and living life to the

fullest is the

> best way to give RA the finger, so to speak However, I know not

everyone is able

> to have the luck I've had in responding to an antiTNF (or worse, can't

afford an

> antiTNF that could potentially really help them) and for that I offer lots

of gentle hugs

> and an ear when you need one.

>

> In other OT news, I'm totally in denial that I'm having this baby in 8

weeks. I haven't

> even unpacked our baby gear yet! If anyone has name suggestions, I'm all

ears. Our

> son's name is Charlie and we really like classic, American names. I'll

keep everyone

> posted on the details, and try to figure out how to send pictures when the

baby

> comes. I'm keeping my rheumatologists from Washington DC in the loop too.

I tell

> them this is their rheumatological grandbaby.

>

> Hugs everyone and enjoy the weekend, Kate F

__________________________________________________

[Guest guest]

You got it, lots of luck vibes coming your way. I hope the appt goes well, if

not, try GW. I heard from someone else that they liked town rheumatology

too. However they're not near the metro and they do that weird street reversal

thing in the am and pm which I find intimidating!

Re: [ ] Pre-conception, Pregnancy & Parenting

Kate, I am going to Dr utotola (sp?) in Leesburg. It will be my

first visit

on Friday, I hope it goes well and I can make progress on getting better

(well feeling better). if she is not what I need I will definitely consider the

gw ones. I have to have someone who is aggressive with my treatment. I want

joint damage to be as slow as possible after all I got to keep up with these 5

kids, LOL

wish me luck

amber

************ **Planning your summer road trip? Check out AOL Travel Guides.

(http://travel. aol.com/travel- guide/united- states?ncid= aoltrv0003000000

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