I'm currently 7 and half weeks pregnant and I have lupus SLE. Diagnosed at 16, currently 23 years old. Have had past pericarditis and foot inflammation on top of all the other normal symptoms.
I had my first appointment last week to take my history and bloods, blood pressure etc and the nurse put me in for a dating scan at 12 weeks but said I will probably need to be seen sooner/ more frequently as I am high risk, but she didn't know so said I just have to wait to see if I get a call / letter for it... I just received in the post my dating scan for the 13th week, and not had any further contact with anyone about anything else.
From week 5-6 I have been feeling very difficult breathing, shortness of breath, right chest pain when lying down, and have formed some sort of rash/blood vessels popping up on my cheeks. So my rheumy gave me a chest x-ray, which was clear, so we went further and did a CTPA scan. Everything came back normal no clots or anything so she put my on a short burst of higher prednisone. I feel better but not completely.
Anyways, enough of my health history.....I was just wondering is it normal to wait this long for my next appointment to be seen with me being high risk? (appointment is 6th September). Also how often does a lupus patient usually get seen and starting from when?
I'm just a bit worried as the nurse that saw me for my first appointment didn't seem to know too much about lupus and was just going to pass the information into the appropriate specialist, which is in my opinion a long route and my files maybe put on held by the specialist it should be going to as I'm sure they are very busy themselves. I guess I just feel abit lost as to the next steps and if there should be a closer monitoring of me.
Thank you! X
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PositivelyLupus
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Do you know if you have been screened for anti-Ro and anti-La antibodies? These are the only ones that can potentially cross the placenta and affect the foetus, but they can only cross the placenta from 16 weeks onwards. Do you know if you have antiphospholipid antibodies? These can also increase the risk of complications.
Do you have a specialist rheumatology (or lupus) nurse? Are you able to call them and ask whether the schedule for your appointments sounds right?
If you would like more information about lupus and pregnancy, we have a booklet that you can read/download at lupusuk.org.uk/wp-content/u... - If you would like a physical copy posted to you, please just send me a private message or email me at paul@lupusuk.org.uk with your name and address.
I believe I have a couple years back, and the tests were negative. This is a planned pregnancy and I did see a joint rheumatology-pregnancy clinic to help with planning, changing medication, whether my body was ready for it.
Yes I do have a specialist rheumatologist, she knows about my pregnancy, but she says she won't know much with regards to the pregnancy side of things. So currently I seem to be under 4 separate doctors/clinics, all of whom I may contact individually if my issue is within their speciality field. I have my rheumatologist, GP, Midwife, and the joint rheumatology-pregnancy clinic. I don't know if this is normal, it seems like a lot of different people and not much communication between them all.
Thank you for the information, I would be interested in a physical copy and will contact you privately, thank you!
Hi I have sle, antiphospholipid syndrome and positive anti ro antibody. I had early scans at 6 weeks to check viable pregnancy and I think as I'd had a previous loss. Then after 20 wk scan had regular obs app with consultant and scans 2 weekly from about 28 wks then had both mine at 38weeks as they wouldn't let me go any further. They monitor the growth of baby and if it starts to tail off they will look at induction at maybe 38wks. I continued my aspirin for aps for 1st pregnancy then for 2nd had aspirin and injected daily heparin.
U should have ur booking app soon with midwife but also I'd give the rheum a ring to let them know u are pregnant so they can decide if they want to see u or do anything based on ur diagnosis and history etc.
So yeah, if u let them know then they can monitor u closely and make sure on right meds and off any that u shouldn't be on etc.
Even tho I had all those 3 issues plus I'm late 30's too I managed 2 successful pregnancies and births. If u are ever concerned or not sure about waiting just ring them don't sit worried waiting, that's what they are there for! U and baby are most important thing so do what u feel is right x
Ah yes I had some help with planning the pregnancy, and they did mention being induced earlier (possibly 38 weeks) but I wasn't sure how common that is for Lupus patients. I also heard about the injections, how did you find taking them? It doesn't sound pleasant!
I've had my initial appointment where they took my history, family information and a full blood check. I was just a bit concerned as the midwife who took the details didn't know too much about lupus and was going to pass the information on, so i was worried that it might get forgotten about/pushed back.
I did see my GP today and she said I shouldn't expect any appointments before 12 weeks as there's nothing really they can do. Unless there are any complications then 12 weeks should be my first / dating scan appointment I think.
I'm glad the pregnancies went well for you, and sorry to hear about your loss. Thank you for all your help and sharing your experience, it's good to hear from others! x
The injections weren't great (I am a nurse but when it's injected into urself it's bit different!) I didn't like them cos they sting like mad and as my bump got bigger there was nowhere to inject into really! And baby hated them she used to kick when I injected! I had to do them for 3 months after birth too I used to dread them but just have to think why u are doing it.
I may end up on them daily anyway as part of my aps treatment but trying hard to avoid that!
Yeah there's not a lot they can do before 12 weeks so just try stay positive.
As for flaring... as I left hospital with baby the consultant said oh u might have a flare...and yep 18 months later it's still going! So that's not been the best with looking after a baby and a toddler! Have been on higher steroid dose as it just won't calm down am off back to hospital this week for more steroids!!!
Take care of u and baby, do what u need to do and try not to worry x
Hello so sorry for the late response! Thank you for your help, I had my dating scan last week... Due 10th March 😊 it was so good to be able to see the baby and the little heart pumping away, doctor says everything is growing as expected, and the size was perfect so that's a relief!
I also had an appointment with my lupus pregnancy specialist and she has suggested starting me on heparin from week 20 (as she doesn't think I need them, I think I tested negative for the blood tests, but she wants me on them anyways just to be on the safe side) I really don't want to go on them, and don't really like having unnecessary things going into my body (Esp. With the baby inside me!)
Trying to stay positive, all seems to be going well so far. Oh noo..Yeah I've heard a lot of lupus patients have flares afterward...I hope you start feeling more yourself soon! You must be exhausted.
First, congratulations! Being pregnant is one the most wonderful experiences in life and nothing can be compared to it. I would live it a hundred times and more (if only!)
I've had SLE, Lupus Nephritis,Positive antiphospholipid antibodies,plus all the other symptoms for almost 20 years and this year I got pregnant. All this time I heard both kind of doctors: Never get pregnant and you need at least one year of preparation before trying. Nothing of this happened. I simply got pregnant; luckily I was in remission but under treatment though.
Now, I'm 30 weeks pregnant. And thank God all fine. This is how it's gone:
-I learnt that there are three ways in Lupus+Pregnancy: It can go absolutely normal and beautifully, pre and post; it can make you flare during pregnancy; or, it can make you flare after delivery. In anyway, it will be a year of challenges.
-We're not regular pregnant women. We need more control. The mum and the baby. I was seen by the doctors earlier than usual (12 weeks) in order to determine my health status and new treatment.As soon as I found out.
-It means that I got all the usual blood tests of pregnancy, plus all the ones related to Lupus, every aspect. This is very important. It will depend on each woman's Lupus.
-I got my 1st scan on week 12 but since then I've had more regular scans for checking baby's growth. It's necessary. It'll also depend on the Lupus treatment you were having and how this can affect the baby. My blood is check every two weeks.
-Doctors told me that there's a Fetal Medicine Unit, which can take care of the baby in case of any malformation, etc. This is something important to ask.
-Very important to keep an eye always on: coagulation, protein in the urine, blood pressure, and any symptom that you recognise is related to a flare (e.g joint pain, etc)!
-Finally, it's key to make the best effort possible and love yourself and baby as never ever before you experienced in your life. We have to keep away from flaring at all cost. I recommend: to take your treatment on time/never missing it;don't take any pill apart from the ones given by your doctors! even Nurofen may harm the baby; be very careful with your activities: have a relaxed life, watch funny films, music, magazine, dance your fave music.. laugh like a child; no alcohol at all, even if people push you to, ignore them; healthy diet, at least 90%; don't become crazy about exercise,you'll have the rest of your life for it; surround yourself with funny, positive people; support from family and friends is wonderful, but if you don't have it as it happened to me, think that you're not alone anymore but you have the best partner and companion: your baby; don't fight, don't discuss, don't get sad..it's not worth it, but only you and your baby; try meditation and pregnancy yoga; and rest as much as you can and when you body asks for it.
Believe in yourself and that a happy and healthy baby is growing inside of you.
You and your baby are first, second, third..etc. Hold that thought in case of any trouble, negative people or problem.
Thank you for your incredible response, advice, and sharing your experience with me. Also I am so sorry this reply is so late.
Wow, you was 30 weeks when you wrote this, I'm guessing you're about to pop soon! I hope all is going well with your pregnancy, and best of luck!
I had my dating scan last week, baby is due March 10th 😊 the amount of love the baby has already is unreal. I'm quite young in my group of friends so it will be the first baby..everyone is super exited 😍
Thank you I will ask about the fetal medical unit on my next appointment! I hope all is well with you and baby.
Hello!! My baby is out already! very happy mum here.
How are you?? how are you feeling?? Hope it's all going well with your pregnancy. I have to say that those 9 months were the best time of my life...to have a life growing inside you is absolutely wonderful. After 40 weeks I was induced, all went really quickly. Forceps, ouch. I had no complications at all during the pregnancy, but after. It's been 3 weeks already since delivery and I've gone thru several infections and health problems. My immunological system has gone a little bit crazy right now but at least it's just me, not my baby.
Hi Dalila! I have absolutely no excuse except I am awful and checking notifications etc. I was just looking back on my old posts and found that I hadn't responded to you yet!!
I hope you and baby (or toddler shall I say) are doing well and both still very happy! I have had my baby now also who is 22 months old now. He was delivered by emergency c-section at 36 weeks after my waters broke and I failed to dialate after 24 hours even after induction, he was getting stressed in my belly. Now he is absolutely amazing and doing so so well you wouldn't tell he was prem! That is amazing you lasted until 40 weeks, an achievement! I hope your lupus is better now?
During my pregnancy I was leaking protein so after having my boy I have a kidney biopsy and have now been diagnosed with Lupus Nephritis, still trying to find the correct treatment as what I have tried so far isn't working for me. I am ok though in myself just need to find an alternative medication
All the best and hope you have a wonderful Christmas & New Years ahead xxx
Happy New Year! What a nice surprise to hear from you and your pregnancy experience Very happy to know that your boy is doing great. They grow so fast and they have an amazing energy! XD
Sorry to hear about your lupus nephritis. I got this almost two years before falling pregnant. And now it seems to keep coming back. Mycophenolate worked well for me, and this is what I'm currently taking (again) and I'm trying not to depend on steroids. I must confess that It's hard work, but there's hope!
Good luck and I hope you find what's right for you. Keep posting too!
Yes definitely grow up too fast, he has just had his second birthday - where had time gone?! I'm currently on Mycophenolate now hoping this will calm my nephritis, but I need a new treatment if I want to get pregnant again. Main focus is to get back healthy again first though. Hope you are doing well xxx
I've carried 3 pregnancies with lupus and nothing really happens until after 12 weeks and the dating scan. I think I started to see the obstetrician regularly (but not frequently) after 16 weeks with frequency increasing towards the end. I had lots of scans as I was small for dates with all 3 of them and I remained on 10mg daily of prednisolone throughout with an IV steroid boost during labour. I was an older mum too - age 36, 38 and 39 so extra high risk but my pregnancies were largely unremarkable.
Hello! Thanks you for your response & for sharing your experience. That's great to hear, there's so many stories out there, I guess it could go either way. All is going well so far so I'm staying positive! I'm also on 10mg steroids (up from my usual 5mg) and doctor is thinking to start me on heparin (so scarred!) but everything is for the baby so I will see it through if I have to!
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very happy mum here. 
I wouldn’t wait 7 days my lupus brother and sisters. 
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