Hi all ...am new here...not new to RA....got JRA at 2...am now 32....am a 30 year expert!!! have double hip replacements, and am now expecting....yay!! anyone been thru this?? what can i expect?? kinda scarey.....especially now i am off my meds (first time since i was 11!!!!) looking for support, thoughts, etc!! well on this site you can read my pregnancy journal. but my
experience is not one to go by! it was not an easy one...and i
was medicated. it is very scary. motherhood is one of the
toughest and most rewarding things i have done. aside from all of
that...not much advice for you except rest when you can...and if it
gets to where the pain is bad enough...ask for pred!
if i can answer something specific or something please feel free to ask.
hugs,
wayney
where do i read the pregnancy journal??? did you do it with meds or without>?Well, it's a really long story...but I did it medicated.
Unintentionally though as due to a lot of reasons, no one ever thought
I was preggers for 7 months. No weight gain, absence of periods
was normal for me in a flare, suspected gall bladder problem explained
the nausea and vomitting. But here is the link to the journal.
http://www.arthritisinsight.com/community/stories/wayney1.ht ml
Hope this helps. Oh, and looking back, it was definitely worth all of the agony I went through.
Hugs, Wayney
Hello jenika -
I was born with RA. For my first pregnancy RA wasn't bad. I went thru that one without meds. I was also sick alot with that pregnancy. RA got worst after I gave birth about 2 months after actually. The pain & stiffness was like nothing I had before and it has all been down hill since then.
For my second pregnancy, I was on 5mg of prednisone. I could not go a day without having to take prednisone. I would try but I would end up in pain & stiff. It was hard enough trying to get out of the bed with my big ol' belly...lol...let alone not being able to move. With this pregnancy I didn't get sick. I figured I would, but didn't. Thank God.
That is just my expreince. I believe everyone has a different story.
oh boy...am scared now......i've been in remission since i was 12, but usually take anti-inflamitory for stiffness...i took them until i found out i was pregnant, and been great on tylonol since (tylonol has never worked for me!!) so now i am kinda scared what will happen after birth....does it usually come back????Don't be scared. I had a couple of months before I got to where I am now. So, I am thinking if you go get on some kinda of meds right after you give birth you will avoid the big flare up. I didn't go to the doc until I couldn't stand the pain anymore. Because with me going back to the doc meant starting MTX and I didn't want to, because that meant one step closer to injections.
Like I said every pregnancy is different. Yours might not come back. You might be the same as you were before you got pregnant.
talk to your docs as there are meds that are considered safer if the benefits outweigh the risks. pred is one that is usually considered fairly safe in pregnancy.jenika -
I have JRA. Yes, I have more pain in more joins then before I got pregnant. I don't know what causes it come back even stronger (so it feels); the OB I had didn't explain much to me he always gave statistics for answers. I didn't like him.
But one good thing about constant pain is that it helped me get thru the pain of having a c-section easier, actually it was like a walk in the park. I had an emergency c-section because my son would not come down the birth canal 13 hours after my water broke had nothing to do with arthritis. I didn't have to take many pain killers, I saved them for when the pain of J/RA started kicking in...lol.
Hope my reply helps a lil'.
yes...it helps...i think i am similar to both of ya....i have had jra since 2.....ive been in remission so long i dont really know what a flare up is....i think i burnt out before 10!! i wasn't treated with anything either really wayney...til naproxyn at like 12 or something......so i am hoping to stay in remission, or at least the new drugs can help a bit....does it level off after the hormones settle??Hi,
I am at the moment nearly 30 weeks pregnant and am hitting bursting point ! Up until 6 months pregnant I have been on nothing for my RA - as my Rheumy said too dangerous - though i think he was just too lazy to bother. My RA came on more or less the week I became pregnant. This is my third child - didn't have it before with the others. I have suffered terribly - been in so much pain had to give up my job as can't even drive, Husbad been on compassionate leave from the Armed Forces since last December as now my full time Carer and looks after our boys age 6 & 10.
Good news now though - my thryroid Specialist could see I was at my wits end with the pain as couldn't bend or straighten any fingers, wrists couldn't move, feet and ankles totally in agony, knees and shoulders constantly getting drained of fluid as couldn't move them at all - well he put me onto 10 mg Prednisiolone and no lie within 2 hours I could move my fingers and by the next morning I was bouncing around the place!! I am now down to 7.5mg after approx a month of being on these and am still swelling and pain free except for the flu feeling - but compared to how I was this is a blessing.
Anyway - my OB has said he wants to induce me due to the RA (which I have not had done before) as he does not want me going into labour on a weekend day as the warning is that during or immediately after delivery my body is likely to go into a major flare up as my hormones alter due to the birth - and no Rheumy around at weekends here in my Hospital. I have my 32 week scan coming up end of this month so I will know more then - but this baby is absolutely HUGE - wodner if due to Steroids ????
Don't be put off my story as I have only ever heard good things from other people saying their RA went for the 9 months - trust me to be different!!!
Hope it all goes well fro you and please email me back if I can help at all!
I can't really help as i was undiagnosed when i got pregnant, but i did get a lot easier while i was. But a few months after it hit again and was diagnosed a year or so after that.
But hey I am so pleased for you having a baby!! and seriously jealous
Good luck Jenika,
I have had JRA since I was 18 months old and I am now 35. I have two sons and both of my pregnancies went extremely well. In fact I felt my best when I was pregnant which I found out later is quite the norm for people with arthritis. My doc said most people will go into remission when they are pregnant. ( now I know some people have terrible pregnancies too!! ) But all I can say is how it went for me and it was wonderful. I always kid my doc about inventing some pill that makes my body think it is pregnant!!! Because my arthritis just goes away!!!!
What happens is that your body has to concentrate on that little baby and it almost forgets about your chronic illness--thats how my rheumy explained it to me.
The down side for me was after the pregnancies were over my arthritis came back full force--like it had stored up for 9 months. But I tell you what---my boys were worth it!!!!!!
Good Luck!!!
MarcyI kid around with hubby that I want to become a seriget mother and be pregnant all the time...lol. Is our disease able to be passed on or inheritied?Jooniper,
Yes unfortunately our children do have a slightly higher chance of inheriting our disease than someone who doesn't have arthritis. But that is a risk you take with lots of things. And in my case that is exactly what happen. My youngest son Lucas who is 9 was diagnosed with juvenile rheumatoid arthritis at 2 years old. It breaks my heart even when I write this to you. To know that I did this to him--and all I wanted was to have children and be a mom. It was really really tough the day I found out and I cried and cried and thought I was an awful person.
I am much better now about it and I tell you what---I am the best mom he could have when it comes to dealing with this disease. I have been there and done that--so my experience helps. My mom never knew what to do with me and unfortunately kinda always did the wrong thing.
But I have the disease so of course I understand it. And he is the sweetest sweetest boy you could ever imagine and he is a trooper. The pain has to be really bad for him to even consider complaining. He just keeps on trucking and doesn't let it bother him.
I love him to death!!
Marcy
Marcy,
Thank you for this post. It is exactly what I am facing right
now. The worry about whether my son has JRA. We have an
appt. on the 26th because since March he has periodically been
complaining of pain. I knew it would be pointless then to make
the appt. as I didn't have the complaints documented. But since
it escalated and we've found giving him ibuprofen or aspirin helps I
made the appt early this month. They offered to try to let me speak
with the ped and try to get worked in early but I wanted to document it
so they didn't say I was being paranoid. I had asked his ped when
he was born about testing him for being RF positive. I know that
isn't a definite test as I'm sero-neg but still it would have been a
comfort knowing then if he was neg or pos. I was basically told I
was being paranoid. When he complained of back pain last year I
mentioned it to the doc. She basically said it was an attention
getter or that he was "mocking" me because he hears me say something
hurts. Now, I've tried to never say specific body parts hurts for
that very reason. I normally just say I'm hurting and not
where. So that kinda ticked me off. Made me realize without
writing things down as he complained or at least within a day or so of
it that no one would take me seriously. So, now I'm prepared with
a letter I've written, my hubby will be attending the appt. to back me
up as well. I honestly hope it is paranoia or something easy. But
like you, I told my hubby last night that we are the best parents to
get him through it. I wouldn't wish this on any child but if it
has to affect a child, better one who has parents who know how to lead them through
it.
hugs wayney
Hi Jooniper,
Here's some info:
Heredity — Rheumatoid arthritis is not an inherited disease in the sense that hemophilia is, for example. Genes do not cause the disease, they merely increase the risk of its development. The level of this risk has been studied by the analysis of identical twins, who inherit the same genes. The likelihood that both twins will have rheumatoid arthritis, varies in different studies between 12 and 30 percent. The risk of developing rheumatoid arthritis in non-identical twins and in first-degree relatives of affected people is lower, but still increased (between 1.5 and 4 percent) compared to the population in general (about 1 percent). These studies suggest that genes make a contribution to the development of rheumatoid arthritis, but not large enough to warrant specific screening of family members.
Source: http://patients.uptodate.com/topic.asp?file=arth_rhe/2411
thats good to know about the genetic aspectic of this...i want my little one to be perfect....but i guess i would be a good expert if need be....ha......so everyone got worse after delivery eh? that sucks?? for how long?? i guess pain control at that point is the best plan.......I got much better during pregnancies, and then like the others at about 4-6 weeks after I had a flare. I think that if you are prepared for it, though, you'll be ok. Congratulations!
I've been told by a GP its not inherited, and there isn't a lot of point in my son being seen as they'll say its growing pains!
He is 5 and wakes in the night, screaming and sobbing with pain in his knees. Normally if he's been doing a lot of running around and more so when its damp or raining. Fire works night last year was classic example. Then when it snowed i found out he hadn't been telling me his knees were hurting as he knew i was in pain and didn't want to upset me! Bless him. but i don't know what to do now, my rheumy reckoned it was worth getting it checked out, but i can't do that without him being referred! catch 22!
Tori,Hi Tori,
I have been told so many things by GP's that have turned out to be wrong. My son, who I suspect has had JRA since age 2 1/2 and is now 12 and yet to be diagnosed had Iritis a few years back and the GP told me it was I an allergy. I had been an Opthalmic nurse for 14 years and was pretty sure of what I was seeing. When I told the Dr of my experience and asked for a referral to the Opthalmologist he just looked at me and said "this is an allergy", handed me an RX for an allergy drop and told me to let him know if it was'nt better in 4 or 5 days. I left the office and went straight to the Opthalmologist....sure enough full blown Iritis. Blood tests were done and his ANA came back positive and the RF negative. I was told because the RF was negative there was no way he had or ever would have RA. I started reading everything I could get my hands on and soon found out that the RF in children is most often neg even if they have the disease.
I would mention to the GP that your Rheumy feels that your son should be referred for a consultation by a Pediatric Rheumatologist. If they are still refusing I would have them document in the chart that they have denied your request and also notify your ins co.
I believe your gut is telling you this is not growing pains just like mine is telling me. I don't know if you've seen my posts under "No Diagnosis in sight", but I recently had the Dr visit from hell with my son and am now hoarding money so I can take him once again out of network to a Rheumatologist. We had an apt with the Opthalmologist yesterday and he strongly suspects that the Iritis was JRA related and can't believe there has been no dianosis yet.
My heart is with you, I know how it feels and to be sick and deal with this too can be can be dibilitating. you are a wonderful mom I know how heartbreaking it is to have your child trying to hide his pain from you. There was a time when my son had told me he had so much pain for a long time and I was devasted. When I asked why he had'nt told me he said "I'm just use to it"
Sorry gotta go.....gonna be late for work, could go without a repy though.
Lot of Love and well wishes,
Pam
i jus read the post for wayney, and answered on there, he just came in from school crying, knees hurting and its not even damp today, must have been doing too much i guess. I'm glad someone else has said its a gut feeling, he was 2 1/2 the first time anything happened and he got up one morning and i put him on the floor and he collapsed in a heap clutching his knees, kept happening in the morning so i took him to hospital and they checked him out and said it was all fine, and a few hours later he was running around again, so i guess that may have been the start of it, but it is awful knowing i can't do anything more than i am now, he just soaked in bath, now vegging in front of tv and will probably eat there too, and i can't even carry him up to bed as i'd be in bed for a week myself if i did!!!
I remember how it felt when I was younger. I was diagnosed with it when I was 18 months old. My mom didn't even know there was anything wrong with me. A family friend that worked at a children's hospital in California told my mom that he thought I might have JRA, because I limped when I would run or walk. It wasn't until I was a lil' over 2 years old that I started complaining about pain in my knees and in the morning time I would be unable to walk because my knees were stiff.
She then took me back to the doctors to tell them of my complaints and they put me on asprin and I would have to wear half casts to bed so I would not sleep in the fetal position and be stuck like that until my stiffness eased up.
I remember when the asprin wouldn't help my mom would rub my knees for me, and after a while of rubbing the pain would subside and/or she would put me in a warm bath.
I had to repeat kidnergarden due to my arthritis. Because there were days when I would do too much the day before that I would be so stiff and hurting that I would not be able to get out of bed and move around.
I look for some of the charateristic of JRA in my 6 year old daughter. But she has yet to have a limp, complain about her knees, and shows no sign of fatigue. Heck the girl can stay up just about as long as I can, her days are full of 18 hr days...lol. The only thing I can think of that my daughter might have is ADHD, but everyone has that...lol.
Hi.
I have 6 month old twins, and I have had RA for 5 years. Basically you will either go into remission (something with the hormones) or you will get worse. Most get better. I got worse. I was on Enbrel, it wasn't working, now I am on Humira. I found a chiropractor helped with my pain during my pregnancy. I did take prednisone during my pregnancy when my pain got so bad I couldn't stand it. Good luck, and I hope you have a pain-free pregnancy!
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