Re: Carly-Thank you!!

[Guest guest]

Amy-

It is pretty difficult to chase your 1 year old around when you yourself can

barely walk. You just have to live your life day by day. Some days you are going

to be able to do more then on others. And your children adapt. Like my son, he

probably thinks that all mommy's can't walk long distances, or that they can't

do two fun days in a row. My son is so understanding, he knows that plans can

change at anytime. He does get disappointed but he knows when I feel better I

will make it up to him.

My son was 6 months when I first become sick. I had ALOT of family support. And

I needed every bit of it. Thank God that I had/have such a great, supportive

family. I don't think I could of done it with out them.

Love and Support,

Keri in CA

Re: Kerilyn-Getting Pregnant

--- Kerilyn Read <kcbread3yahoo (DOT) com> wrote:

Kerilyn,

I don't mind answering your questions. To make sure I

answer all of them, I'm including all of your

questions with my answers following.

> How long did you have Stills before getting

> pregnant? Almost 5 years

> Did you have to stop all meds right away? My RD said

I might as well stop the MTX and Remicade cold turkey,

so I did.

> Did you have any flares/pain while off your meds

> trying to get pregnant? Yes. I was working

part-time when I decided to stop taking the meds and

within about 3-4 weeks I was having so much pain and

swelling in my joints that I had trouble walking, or

doing anything with my hands, wrists or shoulders.

This lasted 3-4 weeks, and then my body slowly

adjusted to being off the meds.

> How long were you off your meds before you got

> pregnant? We waited 12 weeks before trying to get

pregnant, then it took us 6 more months to get

pregnant.

> Were you on prednisone and MTX before you got

> Pregnant? I stopped taking MTX approx 9 months

before getting pregnant and I was on 5mg Prednisone

before and after pregnancy. I may have upped the dose

on the Prednisone during the 3-4 weeks of extreme

swelling, and then tapered down, I can't remember.

> Were you also on Remicade? Also until 9 months

before I got pregnant.

> Did you take Remicade or Kineret while pregnant? no

> Did you take any medication while pregnant? Just the

Prednisone My doctor didn't want me to try to go off

of it once I was pregnant, even though I felt pretty

good. Probably in case my body went into withdrawals.

That wouldn't be good for the baby, I'm guessing.

> Did you even need any meds? Or what about pain meds?

> My doctor prescribed tylenol with Codeine, which he

said was safe if pregnant. I took it once before I

got pregnant and I got so sick I never took it again.

I tend to only take pain meds if I'm in extreme pain.

I think that I did use night-time tylenol on occasion

to help me sleep. However, I really felt pretty good

joint wise once I was pregnant.

> Did you pretty much go into remission while

> pregnant? My inflamation levels were still not

normal, but that can be due to the pregnancy, but as

for how I felt, I felt a lot better than before I was

pregnant.

> If so how long after you were pregnant? I didn't

know I was pregnant until about 8 weeks (long story)

but I think it was pretty quickly. I was able to

start working part-time again about 6 weeks before I

got pregnant. But then I started feeling quite a bit

better in my joints, but had nausea, of course.

> Did you have a good Pregnancy? Any problems? Stills

> related? I saw a high-risk OB just in case and they

watched the baby really closely. They said that

taking Prednsone while pregnant can cause

Inter-unterine growth retardation (which I never fully

understood) My baby was really small, but she was

always very healthy. She was born 5'11 " , and they did

induce labor because they were worried about her not

growing as much as she should. But I'm a pretty small

person and so is my husband, so I think they

over-reacted.

> Did you have any problems while delivering? I think

it was more due to the induction and my size than

anything else (and the completely ingnorant hospital).

My mom had all C-sections because she was too small

and I told them that may be an issue for me. I was in

labor for 48 hours before they finally used a vacuum

to get her out. I think they frequently forgot about

me while I was there. They were in no hurry. I kept

reminding them of my condition and that no sleep and

stress can have very bad effects on my health/body,

but I don't think they cared. I had to remind them

every morning that I needed to take my Prednisone or

my body would go into withdrawals. If you see a

high-risk OB, I highly recommend an office where you

see one of just a few doctors who all know your

situation. I literally saw a different resident EVERY

appointment. It was not a good situation. I knew it

from the first appointment that I didn't want to go to

this office, but it was the only high-risk office my

insurance covered. Make sure you like your doctor!

> What about after you had your baby? see below

> How long after you baby was born did symptoms come

> back? I wasn't able to nurse very long and had to

supplement with formula from her birth anyway, but

symptoms probably can back with 4-6 weeks. My

recovery may have been the worst part. I don't know

if it was because of the long-term Prednisone use, but

my insides (without getting too graphic) did't heal

very quickly. Around 6 weeks when I was supposed to

be feeling quite a bit better I went to the OB hardly

able to stand for more than a few minutes without

extreme pressure. I was super raw on the inside and

still bleeding from the delivery. Then at my

follow-up at 9 weeks nothing had changed and they

finally noticed that I had a bunch of " tags " on the

inside that weren't healing and they had to cauderize

them. It was extremely painful for about a day, but

finally started to heal after that.

> Did it come back worse? I wouldn't say worse, but I

put off going back on meds as long as I could. I

wanted to make sure that I really needed them before

taking them again. I was functioning fairly well once

be body got used to no meds before the pregnancy so I

had hoped I would get back to that, but no luck.

> Don't worry about all the questions. For me the

unknown is the scariest thing. I was the same way,

and as you know anything could happen. But it is

comforting to hear someone else's success story. I

hope my answers help and that they make sense. Let me

know if you have more questions.

Good luck with your efforts. I hope you also have

success.

Carly

Phoenix, AZ

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