Re: Being of childbearing age with JRA

[Guest guest]

I usually remain silent but I must tell you that I am 24 years old and

have not tried to bear children but plan to. You are not crazy about being

concerned by any means. My mother and I were always questioning whether drugs

like gold injections, prendisone, tolectin, voltaren, celebrex, methotrexate

and most recently embrel could effect my chances of having a child or put a

child in jeopardy if I were to become pregnant while taking my medication. I

can only say that when I became of child bearing age, that the doctors could

not emphasize enough how my pregnancy must be well-planned out by freeing my

body of the drugs before even beginning to consider getting pregnant. This

makes sense. This warrants the concern of, heaven forbid, my pregnancy not

being planned. The doctors response has always been that there should be no

question that I could potentially jeopardize my pregnancy or have major

complications with myself or the child I am carrying. So, when the time

comes, even though they don't know the actual repercussions, I will live by

their advice and work with doctors to plan my pregnancy. Hopefully, that will

be all the precautions I will need to take other than monitoring my own

health. I must say, though, that I too would love to make a career out of

being pregnant considering how a majority of women experience an offset while

pregnant! I only hope that research is continued to understand the reasons

this type of " remission " occurs in the third trimester and safely replicate

the process. Now that would be a miracle of life! Good luck and stay healthy!

Sincerely, Melodi

[Guest guest]

Melodi - have the doctors said anything about the JRA being passed on? I guess that's my bigger concern. I believe that it has to be heriditary in some way, my dad had it when he was young, or some sort of form of it, then as an adult he had it really bad. I had bouts of sore legs, etc. when I was young but nothing serious or anything like . I guess I should ask my doctor but he'll probably think I'm nuts to be thinking about that now.

Pat & (1 year Systemic)

[Guest guest]

Melodi

thanks this does concern me about the chances of having a good

pregnany if she decides to want kids

shes on this Voltaren and once she started it she gained weight on top of

this she just had started her period she had it 1 time and thats it

no more signs of her starting her period the doctor said that the medication

would stop it but that would straighten out later IF this medication would

do this then it has to mess with the reproduction of a person

but i realize at this time it was go for something to help her and deal with

risks later

shes allergic to several meds so this one did help her

its best to talk with a doctor about doing tests i assume

Robbin

[Guest guest]

Pat

you mentioned that growing up you had sore legs

when i was growing up i also had severe pains in my legs all they told my

mom was it was growing pains and she would put something on my legs and rub

them

when i had my son my labor pains were in my legs also

inheridity i am not sure on but something has to connect

somewhere

wonder if i could get a blood test done on me and melissa to see if theres

any gene

matching to something so it could be a connection

far fetched right?

Wonder if there has been studys done where its like this before

Robbin

[Guest guest]

Pat-

You're not nuts. My daughter was diagnosed at 17 mos. and that was one of

the biggest things I worried about right away. A genetic predisposition can

be passed on, but it's generally thought there has to be a viral or

environmental trigger. I think there's a definite reason for concern. I

know so many people who can't have children because of infertility that I

came to the conclusion worrying about this made no sense. When and if

wants to have children, this is a decision she and her husband will have to

make. A geneticist can help determine the odds of it being passed on. If

they don't want to take that risk, and really want children, there are other

alternatives. For some reason, it seems worse knowing up front there may be

an obstacle, but lots of people deal with issues like this and it all works

out somehow. Just wanted to put my two cents in because, as a mom, this was

an issue I couldn't help worrying about for my girl.

Diane (, 2, pauci)

[Guest guest]

My husband's aunt had JRA as a child. Our daughter has JRA. So the connection is a great aunt. Well when my husband's aunt had JRA (about 60 years ago), they thought she had polio b/c she could not walk. She was hospitalized for years. Some doctor figured out that is was JRA eventually and the disease went into remission. She went on to have 7 children of her own - none of which have JRA. I think the chances are very slim of someone with JRA having a child with JRA. All the factors have to be right - genetically, environmentally, and virally.

Chris

Re: Being of childbearing age with JRA

Pat-

You're not nuts. My daughter was diagnosed at 17 mos. and that was one of

the biggest things I worried about right away. A genetic predisposition can

be passed on, but it's generally thought there has to be a viral or

environmental trigger. I think there's a definite reason for concern. I

know so many people who can't have children because of infertility that I

came to the conclusion worrying about this made no sense. When and if

wants to have children, this is a decision she and her husband will have to

make. A geneticist can help determine the odds of it being passed on. If

they don't want to take that risk, and really want children, there are other

alternatives. For some reason, it seems worse knowing up front there may be

an obstacle, but lots of people deal with issues like this and it all works

out somehow. Just wanted to put my two cents in because, as a mom, this was

an issue I couldn't help worrying about for my girl.

Diane (, 2, pauci)

[Guest guest]

Dear Robbin,

I would moniter the lack of menstation because I began to have

difficulties during menstration. Actually, bleeding a great deal as well as

becoming physically ill (passing out, vomiting, etc) I had to begin taking

birth control to regulate my menstation. This made it more bearable. I was

told that the anti-inflammatories served as a blood thinner, somewhat

explaining the reason for excessive bleeding. I began seeing a gynochologist

at what I thought was a young age, but really should begin when menstation

begins. It's so important to look into seeing one, even if your daughter has

not a thought yet of bearing children. I often had to keep in mind that my

rheumatologist was very good at what he specialized in, but it's always good

to check with one who specializes with the area of concern, as they pick up

on so much more. I hope you understand what I mean.

Sincerely,

Melodi (24- JRA)

[Guest guest]

I have to second what Melodi is saying - not having regular periods can create a

lot of reproductive and gyn problems down the line such as infertility and even

being at a higher risk for cancer. Use of hormones to regulate carries other

risks - and should be discussed with a gyn to make an informed decision. Just

my two cents.

Val

In a message dated Tue, 6 Nov 2001 9:31:34 AM Eastern Standard Time,

sidolem@... writes:

> Dear Robbin,

> I would moniter the lack of menstation because I began to have

> difficulties during menstration. Actually, bleeding a great deal as well as

> becoming physically ill (passing out, vomiting, etc) I had to begin taking

> birth control to regulate my menstation. This made it more bearable. I was

> told that the anti-inflammatories served as a blood thinner, somewhat

> explaining the reason for excessive bleeding. I began seeing a gynochologist

> at what I thought was a young age, but really should begin when menstation

> begins. It's so important to look into seeing one, even if your daughter has

> not a thought yet of bearing children. I often had to keep in mind that my

> rheumatologist was very good at what he specialized in, but it's always good

> to check with one who specializes with the area of concern, as they pick up

> on so much more. I hope you understand what I mean.

> Sincerely,

> Melodi (24- JRA)

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

I live in the Orthodox Jewish community, and I'm almost 20 years old, which

means that I am dating and that G-d willing I will be married within the

next few years, if not within the next year. In this community it is very

important to have children (though of course if you can't that is

understood), and I have always wanted to have many. I don't worry too much

about passing the JRA on, because I figure it is a small chance, but I do

worry about the medicines, and my ability to have children. I am encouraged

by everything I read that says RA can go into remission during pregnancy (I

joke to my friends that I'll just have to stay pregnant for most of my

child-bearing years). But I'm also worried that when I get married I will

have to go off my medicines. I suppose I will be able to keep the

anti-inflammatories, but mostly I worry about the Enbrel and the Plaquenil.

I suppose I will just have to find a good doctor to work with me.

It is definately not a silly worry, because to many women having children is

an important part of life. But I know people with much greater disabilities

than mine who have had healthy, happy children, so I trust in myself and in

G-d that it will all work out.

Elisheva

_________________________________________________________________

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[Guest guest]

Val

irregular cycles have been a female ting in my family so far my mom was very

fertile but the girls have problems we dont believe in taking birth control

but some how

the doctor says its a hormonal imbalance and prescribed birth control for my

sister

it did help her but she also stopped taking it due to side effects

not exactly sure why mom was so fertile and never had a problem but all of

the girls she had does have this problem melissa my daughter started then

stopped shes only had 1 cycle and that was when she was 13 i talked with

the doctor about it and she said not to worry some medications will do this

and if she doesnt regulate by 15 she will do tests

i myself went into pre menapausal stage at 23 had to take fertility pills to

have melissa at the age of 34 was told to expect changes hot flashes cold

flashes lolololol did that done that lolol what else is there to expect

Robbin

[Guest guest]

Robbin - didn't mean to pry - but I was concerned personally to find out that my

irregular and untreated cycle through out my 20's and 30's put me at a high risk

for cancer - & no one told me so that I could decide for myself which risk I

would be willing to take (side affects of meds, or taking my chance.) Since

cervical cancer and ovarian cancer is already very high on both sides of my

family I feel the doctors should have been more diligent in protecting my health

or at least giving me the information. Take care

Val

Rob's Mom

In a message dated Wed, 7 Nov 2001 9:55:56 AM Eastern Standard Time,

Robbin40@... writes:

> Val

> irregular cycles have been a female ting in my family so far my mom was very

> fertile but the girls have problems we dont believe in taking birth control

> but some how

> the doctor says its a hormonal imbalance and prescribed birth control for my

> sister

> it did help her but she also stopped taking it due to side effects

> not exactly sure why mom was so fertile and never had a problem but all of

> the girls she had does have this problem melissa my daughter started then

> stopped shes only had 1 cycle and that was when she was 13 i talked with

> the doctor about it and she said not to worry some medications will do this

> and if she doesnt regulate by 15 she will do tests

> i myself went into pre menapausal stage at 23 had to take fertility pills to

> have melissa at the age of 34 was told to expect changes hot flashes cold

> flashes lolololol did that done that lolol what else is there to expect

> Robbin

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Val

darlin you didnt pry women talk and this is great theres never a wrong

question

and if you dont ask how are you to know right? its a touchy subject to some

but i feel nothing is touchy when its women talking about theirself

do you do self breast exams every month? cancer USE to be a taboo subject

now i feel hidden info is bad for everyone

info helps each one of use to survive

now if we dont discuss things how are we to know things

technology now has came along way with different diseases

ask me anything and dont feel embaressed its natural

as far as i know on my moms side and dads side theirs no breast cancer or

cervical cancer but on my step dads side all of his sisters ended up with

cervical cancer

so some of my sisters are high risk

even though i dont fall in a risk factor as with having someone blood related

with it

i still worry because of the enviroment risks

the cycles being off is about all that i would be risked at

medications i have taken years ago what could they have done later in life?

breast cancer i use to be 36 DDD and i breast fed each child for 17 months

now i have 34B is that lolololol

but if you dont do self breast exams PLEASE start and do it every month

and go to the GYN every year to be on the safe side

every woman needs to do this

cancer is curable if caught in time

Robbin

[Guest guest]

Robbin

Yes, I do self exams every month & I have cervical biopsy every six months due

to some problems in that area - so it is an area of concern for me. Thanks for

listening - and you are certainly right - knowledge is power.

Val

In a message dated Wed, 7 Nov 2001 6:51:21 PM Eastern Standard Time,

Robbin40@... writes:

> Val

> darlin you didnt pry women talk and this is great theres never a wrong

> question

> and if you dont ask how are you to know right? its a touchy subject to some

> but i feel nothing is touchy when its women talking about theirself

> do you do self breast exams every month? cancer USE to be a taboo subject

> now i feel hidden info is bad for everyone

> info helps each one of use to survive

> now if we dont discuss things how are we to know things

> technology now has came along way with different diseases

> ask me anything and dont feel embaressed its natural

> as far as i know on my moms side and dads side theirs no breast cancer or

> cervical cancer but on my step dads side all of his sisters ended up with

> cervical cancer

> so some of my sisters are high risk

> even though i dont fall in a risk factor as with having someone blood related

> with it

> i still worry because of the enviroment risks

> the cycles being off is about all that i would be risked at

> medications i have taken years ago what could they have done later in life?

> breast cancer i use to be 36 DDD and i breast fed each child for 17 months

> now i have 34B is that lolololol

> but if you dont do self breast exams PLEASE start and do it every month

> and go to the GYN every year to be on the safe side

> every woman needs to do this

> cancer is curable if caught in time

> Robbin

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Val

thats great anytime just you need a ear just start typeing lololol

Robbin

[Guest guest]

Hi Melodi,

Thank you, for your very well thought out post. Josh is just 12 and a

half now so we still have a few years before this becomes a pressing

concern for him. I've read all the posts on this subject with interest

though, as I know some adult JRAers who've had to decide between health

and quality of life issues or quitting the meds in order to please their

marriage partner, who wanted so badly to have a child. For some, it

caused irreconcilable differences so it's definitely wise to think about

these kinds of issues long before the time comes.

Thanks for your input,

Georgina

sidolem@... wrote:

>

> I usually remain silent but I must tell you that I am 24 years old and

> have not tried to bear children but plan to. You are not crazy about being

> concerned by any means. My mother and I were always questioning whether drugs

> like gold injections, prendisone, tolectin, voltaren, celebrex, methotrexate

> and most recently embrel could effect my chances of having a child or put a

> child in jeopardy if I were to become pregnant while taking my medication. I

> can only say that when I became of child bearing age, that the doctors could

> not emphasize enough how my pregnancy must be well-planned out by freeing my

> body of the drugs before even beginning to consider getting pregnant. This

> makes sense. This warrants the concern of, heaven forbid, my pregnancy not

> being planned. The doctors response has always been that there should be no

> question that I could potentially jeopardize my pregnancy or have major

> complications with myself or the child I am carrying. So, when the time

> comes, even though they don't know the actual repercussions, I will live by

> their advice and work with doctors to plan my pregnancy. Hopefully, that will

> be all the precautions I will need to take other than monitoring my own

> health. I must say, though, that I too would love to make a career out of

> being pregnant considering how a majority of women experience an offset while

> pregnant! I only hope that research is continued to understand the reasons

> this type of " remission " occurs in the third trimester and safely replicate

> the process. Now that would be a miracle of life! Good luck and stay healthy!

> Sincerely, Melodi