25 years old, 6months pregnant, oh yer I have lupus!

[LillyAlfie]

Has any 1 out there gone through pregnancy and dealing with lupus! Im Classed as high risk but have seen midwife 3 times! Feel completely on my own! I have my partner that is keeping me goin he's amazing!

[Rach482]

Hi yes my lupus all started when i became pregnant! Started with a swollen knee at 6 months had it in a plaster to keep it straight and on crutches. Second pregnancy it was my elbow, everything turned out fine and 25 years later i now have 2 strapping sons!!! Glad you have support from your partner, yes sometimes it can seem you are on your own and nobody understands how you feel, but keep positive and i hope all goes well.

[Sher78]

If u click on this link & scroll down 2 October, u can read my experiences on both my pregnancies. facebook.com/lupusandsher

I was diagnosed in '94 & had my children 2002 & 2004. Good luck ;0)

[Gillyg]

I wasn't diagnosed with my pregnancies my first 2 I had no problems but my 3rd I was bad all the way through. The pain was dreadful but no support from my doctors or husband (ex) I carried full term all I got told repeatedly was one child too many what did I expect. Would lie to have thought things had moved on since then but doesn't seem like it. Good luck with the rest of your pregnancy and insist you are helped. X

[Sarajane13]

Hi there, I have 2 children I didn't know I had lupus at the time but was a high risk pregnancy due to previous miscarriages ( lupus symptom) and being ill now known as my lupus too!

I would explain at your next clinic visit how you feel to your midwife and also to your Lupus consultant. Feeling on your own makes you worry more and increases your stress levels.

Talk to friends and look forward to the most wonderful future with your new baby. Try as much as you can to enjoy the baby kicking and the miracle going on inside you. Having a fabulous partner makes a heck of a difference too. Take care.

[artemis5]

Hi there! Congratulations!!! I had my baby girl 2 years ago when I was 26. I was already diagnosed with lupus and due to anti-cardiolipin antibodies and bacause I was taking hydroxychloroquine I was also classified as high risk. I had appointments at the hospital every month. I cannot complain about the pregnancy at all and the care they offered at the hospital (up until the c-section) was great.

If there is no option for you to have any extra scans and appointments with the midwife then at least ask your GP to check your blood pressure and do the urine dipstick test regularly.

[brave]

Hi although i didnt know of lupus ,looking back i was closely monitord because of a certain antibody putting me at high risk of miscarriage,it turns out that should have prompted the midwife to suspect lupus ,but she didnt and just said there could be complications,apart from exacerbation of my already present lupus symptoms pregnancy was good ,and gave me a focus away from feeling unwell ,a normal delivery and a very slow recovery after ,at the time i questioned why i wasnt recovering well?it makes sense now ,so much can be acheived these days ,live your dreams abd keep positive x

[Paula1968]

I was diagnosed with Lupus at 17 and did not get pregnant until I was 31! from the second I knew I was pregnant my lupus doctor had me under a specialist doctor, I hardly saw the midwife, I was put on Fragmin injections so that my blood didnt clot because I was high risk. also my BP had to be monitored as well as my symptoms. My pregnancy went well and we had an album of scan photos before she even arrived. I had a planned section so as not to put strain on my body and was monitored for 5 days in hospital after the birth as after the birth is a dangerous time in your condition where you can go into a major flare up.

You need to insist to see your lupus doctor and ask for additional support during your pregnancy, you are not a normal pregnancy and you need to be supported and monitored!!

Hope this helps you to see what can be done - Go get help and support your entitled to it!!

[jemmyjemjem]

Hiya, my 3rd was ok, I was high risk because of a blood clot in my 2nd pregnancy, contributed to lupus, but only got diagnosed in Sept last year, I saw a gynae every month, but just had routine appt with my midwife, although if I called and said i felt pants she would see me, I also had unlimited access to physio, but this was only after I could barely walk, as he had pushed my hip out of alignment as he was back to back (OUCH). I had a normal birth, my son was born in 2 hours from hosp admission to finish, I had no complications other than ragged membranes, but this is because he was born SUPER quick. My 1st sone was born in 45mins, but we do not know if I had lupus then, my 2nd son was a bit more complicated but that was because I had an undetected blood clot, but that was the consultants fault as he just told me my chest pain was indigestion. I would just go to your gp, explain your a bit worried, your a bit achy and could you have a physio referal and perhaps see the gynae as ur local hosp. I would bypass your midwife for these 2 referals ... Good luck ... J x

[IMillar]

I am sure you know by now that many women who have lupus go through pregnancy and have to cope with lupus. You are definately not alone. Yes you are at higher risk of problems but at least they are keeping a close eye on you. I also had quite a few scans when I was expecting my son. In the end I had an planned caesarian section 6 weeks early because both he and I were struggling. I wasn't able to breastfeed because of the medication I was on and he was so small anyway. I was on injections to prevent my blood clotting, urine tests etc. He was jaundiced when born (common in babies) and a small problem with his heart that resolved with no problems. He had regular appointments with the paediatrician for the first year but thrived since and is now a strapping teenager. Congratulations to you and your partner.

[LillyAlfie]

Thank u all so much. Iv got my GP that passes me to the midwife that then passes me my specialist and then he passes me bk to my gp! It's all very silly. Iv seen my midwife 3 times since being pregnant iv asked for another scan but not aloud 1. I feel like knocking my head against a brick wall! Iv had lupus now for almost 2 years had to beautiful children with ex partner met my new partner and wanted to give him a baby so here I am again. My lupus is under control but baby's big and my body is struggling to carry him. Pressure on knees and hips. U all have given me so much info. Thank u all x

[Sher78 in reply to LillyAlfie]

In all honesty, I was monitored very closely but I have APS too so that made a difference. We r talking 9 years ago here.

I think they tend not 2 panic as much now as so many women with lupus go through pregnancy relatively problem free. Obviously b aware of the risks but just cos it CAN happen, doesn't mean it WILL. Try not 2 worry & stress about it so much either, that can cause more prblems in itself as obviously stress can bring on a flare in some of us. I was so worried 4 the whole of my first pregnancy that I didn't really get the chance 2 enjoy it. My 2nd pregnancy was much more chilled out. Ok, so both were pre (1 4 weeks, 1 almost 6) but other than that, they r 2 extremely healthy kidlets & big pains in the arse too ;0) x

[AlisonM]

I'm 28 weeks pregnant & I have lupus!! I spoke to my lupus consultant & he arranged pre pregnancy counselling so that we knew all the risks before we conceived. Have had a few pre 12 wk scans, see high risk consultant every 4 wks but cause I'm further on every 2 wks now. Have to inject myself with clexane so my blood doesn't clot. Have started to become more tired, 3rd trimester & lupus fatigue I think. But I'm on the home stretch!! Lots of luck & best wishes to you but if I were you I'd stamp my feet about abit!!

I have had lupus for 7 yrs now, and it was under control before we conceived

Alison xx

[Mulan]

I am 35 years old, I have lupus and Antiphospholipid syndrome, my second daughter is 10 months old now and fine. I was monitored very closely, I had a scan and saw the consultant every 4 weeks and also saw the midwife every 4 weeks to check the baby's heart rate. My rhumatologist explained that this was needed as I have anti Ro antibodies and this could affect the baby's heart beat in rare occasions. I am sure you will be fine but I would suggest you speak with your lupus consultant about your worries, If no one is listening nor helping you, then make a formal complaint in the hospital. Good luck with everything. You can find some info on this link betterhealth.vic.gov.au/bhc...

[vonnyrad]

Congrats, you must be so happy but understandably concerned too .As you can see, lots of lupie women go though pregnancy fine with relatively few problems.Speaking personally, I was very closely monitored, but that was more to do with the fact that I had a kidney transplant in the October then became pregnant in the following March.I didn't have any of the common clotting probs or any lupus symptoms at all, in fact I was disgustingly healthy with a constant blood pressure of 110 over 70, rode my bike 5 miles every day 'til the 8th month and worked until a week before the birth, which was long but reasonably straightforward.I then had my second child 11 months later,!I found that pregnancy more tiring but considering I had a young baby who didn't sleep right through until he was about 5(!) it was understandable,The real problems came after the birth of my second, for when she was 6 weeks old I woke one morning with fingers like sausages, knees like footballs and feeling as if I'd been kicked all over-yes, it was a typical post-partum flare-up,but unfortunately, as I was not seeing a rheumatologist at the time, only renal doctors, it was not picked up and I struggled on getting much worse for 18 months before finally being admitted to hospital for some quite extreme treatment, from which I am still experiencing the side effects.All this was many years ago, my 'babies' are now a strappingly handsome and athletic 24 year old young man and a beautiful and loving daughter of 23 who both graduated from Liverpool University in 2011, and I am so proud of them both, they are worth every second of all I have suffered over the years, but I do regret not having the care of an experienced rheumatologist after the birth as I am convinced that if I'd had prompt treatment of my flare-up , I wouldn't have had numerous admissions while my children were growing up, which upset me terribly, and I wouldn't be in the state I'm in today, which to be frank is pretty dire.

It is important that you are closely monitored but if you are seeing your G.P, a consultant and a midwife,between them they will be keeping their eyes on all the different aspects of your pregnancy and you will probably be seen more frequently as your pregnancy progresses- obviously, should you feel unwell or notice any unusual symptoms you should contact your G.P. right away,but also, be aware, that as with other auto- immune diseases, your immune system is dampened down during pregnancy,and when your hormone levels return to normal around 6-7 weeks post birth you can experience a sudden increase in disease activity.This is important to watch out and be prepared for.

Best wishes, I'm sure everything will be fine for you,x