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[clugo]

Hello All,
My name is Claudia. Ia m 31 years old, a mother of a 20 month old beautiful boy and a first grae teacher. I was disgnosed with lupus about six months after I had my son. Five years prior to my pregnancy I was told by my doctors that I had Chronic Fatigue syndrome. I had horrible joint pain, extremely tired, fevers, red spots, swelling and sore all over. My ANA always came back high but I never pursued more test, I guess I knew what was coming. I decided to complete the test after my baby was born because my health just got worst. I couldn't take the fatigue and pain, I was living off motrin everyday1 I was fully diagnosed with lupus and given Plaquenil. I still can't believe it. I just don't accept it. I sometimes think it might be a mistake and I'll go back to the doctor and I don't have this. I look at my son and want to live for him. I was planning to have another child. But I'm afraid that mght be too selfish of me. I'm not taking plaquenil the way I'm suposed to, I'm scared. Have anyone of you gotten pregnant after being diagnosed with lupus? Have you been on plaquenil and gotten pregnant? Should I? Will I ever beable to be off Plaquenil and medications? Thank you for listening. I have a great family and lovign husband. But it's hard to find someone that trulu understands what this feels like. Do any of you have wome words of wisdom for me. It hit me today, it's been a tough day! Thank you! Claudia

[cath]

Dear Claudia,

I'm sorry to hear about your difficult times.

Obviously the choice about whether to have another child is one you have to make in the context of your life in general (what does your partner want, how do you feel, do you feel up to caring for two children, what sort of support do you have?).

In terms of the medical side, I believe modern thinking is that women who just have lupus (and not also APS) and who's SLE is being managed well have an excellent chance of managing a succesful pregnancy.

APS is anti phospholipid syndrome, also called hughes syndrome. It can cause blood to clot more easily than normal. One of the results can be miscarriages and stillbirth. Your rheumatologist or obstetrician can test for antibodies. There are medications which can be used to make the blood less likely to clot and reduce the risks of fetal loss.

Talk to your rheumatologist about your thoughts, and if you want to go for it, think about discussing the risks with an obstetrician befor you get pregnant.
Generally you would be placed under obstetric care and monitered more closely than someone without SLE. There is a higher risk of complications such as preeclampsia, preterm labour and intrauterine growth retardation.

A lot of women will tell you they felt better, not worse when pregnant, which is good news!

After the birth there is a chance of a 'post natal' flare. I believe the well educated doctors will often anticipate and counteract this with prednisilone after the birth.

As for medications and pregnancy, you really need to talk to your doctor. Some will recomend staying on planequil whilst some suggest switching to a steroid.
One of the tricky things about medicines in pregnany is that it is hard to do scientific studies on their safety (whould you volunteer to take something that might hurt your baby just for an experiment?). The consequence of this is that pharmaceutical companies are very reluctant to say thet something is safe to take in pregnancy. Therefore the recommendations are usually 'don't unless esential'.
That doen't always mean they are definately dangerous. It just means they haven't been tested thouroughly. That is why you need to talk to your doctor about what is best for you. Sometimes it is better not to risk a definite problem such as flaring by quitting a drug than it is to risk a problem we don't know if it even exists such as a drug side effect for the baby.

It really is better that you know about having lupus. The chances of living long and well are so mch better with good medical care and the right treatment.

I dont have a peronal story to share, only what I've seen as a midwife.

I know many other people here will have personal experiences to share wih you though! :flowers:

[MiMi04]

Clugo,

Don't give up. I believe the kids are blessing. I'm going to have my first baby now. I'm in my 20th week pregency and still on Plaquenil. I were just dx by the end of last year and on Plaquenil since. I'm scared but I'm willing to take this risk to have the baby for my husband. The chance of med Plaquenil to get to baby is very low. And I also visit more than 1 doctor and they all told me Plaquenil is safe and there are a lot of women having babies while on it.

Best luck to you. I'm having positive attitude of having this baby. I know he/she is doing great.

[Hatty]

Dear Claudia,

Poor you! Quite understandably, you sound worried and scared about the future. I think, however, that things are on the up! You have been diagnosed (which for many of us is a final and wonderful relief after years of being poked, prodded, disbelieved and told to see psychiatrists!) and you are being treated.

In my experience, Plaquenil is a wonderful drug which has helped me enormously. I have a 14 month old son and am 22 weeks pregnant with my second baby: both pregnancies I have been taking plaquenil and fingers crossed have had no problems! I have had occasional flares but nothing uncontrollable.

I think the most important thing to avoid is stress: we all know toddlers are good at this style_emoticons/<#EMO_DIR#>/smile.gif but you need to try and manage to live a life that is relatively peaceful, well planned and do not expect too much of yourself! I think that if you do that, things will be ok.

Everyone is frightened when they first get diagnosed, but read on and you will see how many people there are out here with lupus who are living the best lives they can: and the support of the other people on this site is very important, as you can have a good rant and everyone understands!

Best of luck and I hope you manage to enjoy your son and have a bigger family if that's what you want.

All the best,

Hatty

[cookie]

Hi Claudia,

Being diagnosed for 4 years now and being pregnant right now, I understand your worries.

I've already read beautifull stories here and I know that most pregnancies with lupus are going fine. Although there is one other thing that, for me, is worth considering if you are planning to have a baby. Do not expect your pregnancy to be a walk in the park... And this is not ment physicly - because we all react differently to the hormones and meds - but psychologicly. I know from my experience right now that the fear of the illness or the meds affecting your child, is an enormous load to carry. Our daughter had IGR in week 23. I'm in week 34 now and to be honest, I didn't have any peace of mind ever since. I guess I wont have any untill she will be born and be OK... This is absolutely no reason not to have a child - not a second of regret yet - but it can't hurt to be prepared.

As for the meds, I take plaquenil (400) and prednisone (15 a day for half a year) and I give myself shots against 'sticky blood'. My doctors - and I have a reumy who is specialized in the combination lupus-pregnancy- assure me that the drugs won't hurt the baby. (The steroids only hurt me, but h?, I can live with that style_emoticons/<#EMO_DIR#>/tongue.gif )

So, don't let lupus stop you from what you really want if the doctors say it is possible. But prepare yourself and your hubby to be strong, and I'm sure you will be just fine !!

Cookie

[beauty]

hello...


Well I've been there...to start off I had my first baby at 28 weeks...so 7 months...she was only 1 lb 5 oz...she lived 17 in ICU....then passed...I found out I had APS ( antiphopholipids) a blood clotting disorder...wich was what made her so small...I got veryyyy sick...high blood pressure...enlarged heart...and kindney problems...Was told if I ever got preg again I would have to go on shots of blood thinner in the belly..2 a day for 9 months...took me about 6 months before my health got better..was bed rest for about 3 to 4 months...due to what now I think was a lupus flare...many drs. later I said I wanted to try again...they wasn't very happy and told me allll the risk....from lossing another baby to lossing me...or having to abort to save me...to going into heart failure or kidney transplant...I knew going into it what the rick was...but I couldn't live my whole live not knowing...everyone thought I was nuts...but they had kids...lol...and I just knew I had to try....I was on plaqenil...and my blood thinner...was on bed rest 3 months....dr. want to be very save b/c of all the problems last time...I now have a 3 yr old daughter...health....I didn't really get sick...broke out in hives I think due to lupus....4 days later after a shot of steroids they went away in 3 hours....then I wanted to try one more time...same treatment...and risk...oh baby could of been born early with something wrong...worked right up to planned c-section....everything went good...of course due to APS...I had a few scares...but eveything went good until 2 weeks after I had my son...I had a hematoma...where blood bleeds outside of veins... very painfull...lol....was in a wheelchair about a months....and had pain and numbness for a 8 months....but all better now...and it was all worth it...would go through it all over agin....but i'm now done .....so a 3 yr and 10 month old...and was just confirmed after 5 yrs...last mon. I do have lupus...so it can be hard but it's worth it ...if you have any question email me @ beautycr94@hotmail.com Good luck...and both kids was health and no problems...and I was veryyy high risk....just make sure to get a good high risk ob...and from what i read...is lupus hits you more after preg. then during...I know my dr said I had to stay on plaqenil b/c the risk was greater without it...I was 25 when this all started...and I am now 30...

carla