Hi there, I am newly diagnosed with Lupus this year in February. Had IVF egg collection last September and have 2 eggs saved. Can someone share their experiences and what did they do to make it a successful pregnancy. I understand that Lupus will make it difficult for me to get pregnant, because my own immune system will reject the embryo. I am really desperate as I am 44 years old and my egg quality has dropped and I can’t have another IVF because of coronavirus virus. Can someone please share their experiences and advices me.
Thank you
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I would advise you perhaps ask to be put on hydroxychloroquine as there can be complications with the baby having heart block (resulting in the baby needing a pacemaker at birth or later on).
Thank you for your reply, I am currently taking Hydroxychlorquine since July. It’s almost 4 months on this drug and I still have inflammation around my joints. How does hydroxychloquine help reduce baby heart problem?
Hi there, I’m not quite sure it’s 100% proven to prevent the issue but you should certainly mention it to your doctor. I sadly was not diagnosed with lupus until after the birth of my baby.
Thank you for your reply. Was your pregnancy ok? I had aches in my joints and didn’t think much of it at the beginning, thought I must have hurt myself in the gym classes. I had IVF in September and the following months I was not feeling great more sever aches joints and feeling super tired. Because I am undergoing IVF treatment it prompt me to visit my GP and was referred to see a rheumatologist. My rheumatologist said the IVF drugs can cause a trigger of inflammation and I need to wait 6 months of remission. It’s been 4 months I still have inflammation after taking Hydroxychlorquine. How long did you take Hydroxychlorquine before you have no inflammation?
I’ve had two pregnancies while on Hydroxychloroquine. While I was pregnant I was referred to my local hospitals specialist high risk unit where they monitored my pregnancy closely. I had more scans, bloods, tests took my medication throughout. My team of specialist midwives and doctors all said the key was to try and stay as healthy and calm as possible during the pregnancy and any concerns to flag with community midwives or to the specialist midwives on the unit.
My Rheumatologist also said if thinking about a family to do so when your Lupus is at its most calm and not during a flare which is when it’s more problematic. Hope that helps.
Thank you for reply and sharing her experiences. Can I ask what are they looking for in the extra blood test and scans?
How long did you take Hydroxychloroquine before you don’t have any inflammation? I was told by my rheumatologist that it takes 8 weeks but I have taken the medication for 4 months and still have inflammation.
Did you need to take any other medications during your pregnancy?
Bloods if I have anaemia or any other clues why I’m having prolonged heavy bleeding. Scans to see if my fibroids have returned after having surgery last year to remove and anything else that’s happening internally! It’s got to the point my quality of life is impacted each month, periods lasting over a month! That’s not normal!
Hydroxychloroquine I’ve been on it about 12 ish yrs a long haul! Took a while to be diagnosed with Lupus! Lots of flares and issues early stages of starting meds adapting to doses and impact on my body.
Since I’ve learnt to listen to my body, if tired don’t push it! If achy rest always tomorrow, pain relief, be honest if feeling crappy to those who love you!
Throughout pregnancy I was on Hydroxychloroquine aspirin and my vitamins and a Vit D supplement. My Lupus was stable I wasn’t having flares where I would be bed ridden lack of coordination speech joint pains to name a few. My regular bloods done by my Rhumy we’re coming back ok had a discussion with Rheumatology about conceiving they said this would be a good time to try due to my results. They had already explained I would need to take meds throughout would be under care of specialist midwifery unit, and would have a lot more tests due to possible heart block in baby. Also explained could have flare due to pregnancy on body and being more strain. Extra tests during pregnancy reassuring scans specialist midwives great, the whole team and my community midwife and dr were all fantastic throughout both my pregnancies. Both children born without heart block or issues one breast fed and one bottle! Both big babies 12lbs 13lbs!
It can be done but seek guidance from Rheumatologists with your results explain your wanting to conceive and your plans with them how your feeling etc. My GP was good but ultimately it was Rheumatologists who gave the ok if that makes sense. It does also take a while for your body to get used to the medication.
Apologies for eye soreness in reply!
Hopefully some of this can help but, Lupus effects people in different ways so my experience maybe different to yours and others on the forum.
I wish you good luck and hope your condition stabilises and every success with IVF.
Thank you so much for your time and responding to my questions and sharing your experiences. I am sorry you had fibroids I didn’t know they can cause a month long period, glad you had them removed. I found your message is very useful information for me and knowing what to expect. It’s great the midwife and doctors monitoring you closely. That is reassuring the extra tests and scans to make sure you and baby are ok. But it is scary thought, lupus can cause the baby’s heart block. Would you say taking Hydroxychloroquine help reduce baby heart block?
Wow big babies 12-13lbs, well done for pushing them out. Was you able to breast feed while taking Hydroxychloroquine? Is Hydroxychloroquine safe for baby?
My last blood test in September showed one of the key indicators has increased 3 times since my first blood test done in February, the rheumatologist said it is evolving. It explains why after 4 months of Hydroxychloroquine I still have inflammation. I really hope it calms down soon. Xx 😊
Fibroids can cause heavy periods I think mine have grown back sadly. But I’ve got a scan date for December so I’m really relieved as I know something isn’t right internally😢
I was already on Hydroxychloroquine and remained on it throughout both pregnancies and breast feeding. It was deemed by the rheumatologist not safe for me to come off my meds, it’s also one of the safer ones pre and postnatal.
Im sorry your bloods are showing indicators. But I’m glad your being monitored.
With Lupus always the possibility the baby could get it. But this also would be the same in inheriting other medical issues or traits from either parent. With Lupus you know you can get treatment and hopefully you will have less flares once medication and doses are working with your body.
I have seen a post on here in the last week somebody who had given birth in October sharing positivity❤️ if I remember her name I’m having a brain fog day I will try and post it, unless anybody reading this remembers?
Listen to your body if your tired rest or achy don’t over do things. If you are into exercise continue if you can or tweak what your doing. I’ve had say to my children sometimes, I’m having a tough day my body isn’t working how I want it to I need to recharge it! Instead of trying to battle through and make myself really unwell. I do find during colder months I do struggle a bit more with my Lupus. I think in the summer your doing things more distractions. Winter your bit more sedentary, so your more aware of your pains.
Has your Rheumatologist given any indication from saying it’s evolving to when you would be able to resume IVF?
I hope your inflammation subsides and the medication continues to help you and you can continue IVF I will have my fingers crossed for you.
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Hi new to this site glad to have found it though. Would appreciate a hello from fellow users.
SLE
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