Pregnant with lupus and fibro

SarahCourtney

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Hey ladies,

Just wondering if anyone else has Lupus or Fibromyalgia. I have both and currently 5 weeks pregnant. Wanting to know if anyone has similar and can help me understand the process of being a high risk pregnancy and what that involves :)

X
 
I'm not sure about lupus but I have rhumatoid arthritus which is an autoimmune disease too. The advice has varied between doctors, one said it might have contributed to my missed miscarriage (something to do with the blood vessels) and that I should take aspirin every day. This of course panicked the hell out of me as I started to blame myself for losing my baby. However, the RA website totally went against that and said there's no increased chance of miscarrying with the condition!! I would see an obstetrician who will be able to guide you on what to do to be healthy. Good luck, wish you all the best in your pregnancy. Xx
 
Hi hun, i have fibro but they are also not sure about the lupus as i have a postive ana and sum symptoms but they are putting it down as fibro atm. As you can see im 27wks and doin ok so far, i am just starting to get back and joint pain again but it wasnt too bad for me at the start. I have had no extra care for my fibro as they just said they wud keep and eye on it for me and to let them know if i get probs. They have arranged physio for me and my mw is fab.

Really hope you will have a healthy and happy pg hun, happy to chat anytime.

Michelle. x P.s my nan has lupus and had 3children and my auntie has RA and she too had 2 children so it can be done. xx
 
I'm not sure about lupus but I have rhumatoid arthritus which is an autoimmune disease too. The advice has varied between doctors, one said it might have contributed to my missed miscarriage (something to do with the blood vessels) and that I should take aspirin every day. This of course panicked the hell out of me as I started to blame myself for losing my baby. However, the RA website totally went against that and said there's no increased chance of miscarrying with the condition!! I would see an obstetrician who will be able to guide you on what to do to be healthy. Good luck, wish you all the best in your pregnancy. Xx

I have been told to take low dose aspirin and have been since I found out. You mustn't blame yourself hun, it's impossible to know what caused the miscarriage. But I can understand those feelings. No matter what, when you miscarry, I can imagine you will always blame yourself for not doing something right. That's the annoying thing though, no one can do everything right for their entire pregnancy - if nothing else, there are WAY too many rules to remember lol xx

Hi hun, i have fibro but they are also not sure about the lupus as i have a postive ana and sum symptoms but they are putting it down as fibro atm. As you can see im 27wks and doin ok so far, i am just starting to get back and joint pain again but it wasnt too bad for me at the start. I have had no extra care for my fibro as they just said they wud keep and eye on it for me and to let them know if i get probs. They have arranged physio for me and my mw is fab.

Really hope you will have a healthy and happy pg hun, happy to chat anytime.

Michelle. x P.s my nan has lupus and had 3children and my auntie has RA and she too had 2 children so it can be done. xx

Thank you soo much. I am so relieved to hear about your nan!
Out of curiosity, how have you generally found your pain during pregnancy? Imy big concern I suppose is being heavily pregnant and what that'll do to my back, shoulders and hips. Also, giving birth on top of fibro pain at its worst scares me. I can deal with high levels of pain - I often end up in hospital with horrendous fibro pain. I just hate the idea of having the biggest flare up of my life because of being heavily pregnant and having all the labour and birthing pains to contend with too!

Can I ask you both what your labour plans are? Thank you both sooo much for your responses xx
 
I'm not sure, but I've just booked an appointment with my doctor to discuss trying again and will ask for advice. Will let you know how it goes! How much aspirin do you take btw? Was thinking of doing it myself but should talk to the docs first! Xx
 
Hi I also have fibro, but I don't have lupus. When I had an ectopic pregnancy in 2011 I was taken off all my meds, but when I went to my gp's earlier on this year dor advice because we're trying I was told that there's only one of my existing meds that could cause problems (I have other problems as well). The advice seems to cary from doctor to doctor. I will watch this with interest to see how things go on.

During the Ectopic i actually felt really good for a little while, but it wasn't long before my aches and pains came back when they took me off my meds. Just take care of yourself and bug your dr if you have questions or problems.
 
I'm not sure, but I've just booked an appointment with my doctor to discuss trying again and will ask for advice. Will let you know how it goes! How much aspirin do you take btw? Was thinking of doing it myself but should talk to the docs first! Xx

Low dose aspirin has been proven to help prevent miscarriages. In some parts of the country I believe it's given out as standard to pregnant women. I take 75mg once a day. Ring your GP or specialist and just ask over the phone because I think it's always worth knowing ASAP if it's something you should take. :)

Hi I also have fibro, but I don't have lupus. When I had an ectopic pregnancy in 2011 I was taken off all my meds, but when I went to my gp's earlier on this year dor advice because we're trying I was told that there's only one of my existing meds that could cause problems (I have other problems as well). The advice seems to cary from doctor to doctor. I will watch this with interest to see how things go on.

During the Ectopic i actually felt really good for a little while, but it wasn't long before my aches and pains came back when they took me off my meds. Just take care of yourself and bug your dr if you have questions or problems.

I will do. Thanks hun! Have been through all my medicines with my specialist (months ago, before I was trying but because I knew we would be trying before I could see him again) and my GP and have come off most of them. However my two main drugs I am allowed to stay on as the risks of coming off them outweigh the risks of staying on them, if that makes sense! X
 
I'm on my second pregnancy with an SLE diagnosis but I am not on any medication as my lupus has been completely dormant for over 8 years now. Generally a high risk pregnancy with SLE involves regular appointments at a specialist Maternal Medicine clinic. Your consultant should arrange this once you have told them that you're pregnant.

At the clinic they will take blood samples regularly to check how your disease is reacting and look out for any flare ups. I was told that with SLE generally pregnancy tends to reduce the risk and severity of flares during the period of you being pregnant but increase it in the period immediately after you have the baby so they will be keeping a very close eye.

You may also get an early scan and certainly regular growth scans (so probably around 7 scans in total rather than the usual two). Whether or not you have a higher risk of miscarriage depends a lot on what your specific antibody profile is. I think the presence of antiphospholipid antibodies is particularly linked with that.

Many women with lupus have a perfectly healthy pregnancy and a healthy baby with no issues but they will be very careful with you especially if it is your first. My consultant actually described pregnancy as the 'stress test' for lupus. I had a completely problem free first pregnancy and have now been discharged to a consultant in the local hospital rather as they do not really expect problems the second time round.

:D
 
I'm on my second pregnancy with an SLE diagnosis but I am not on any medication as my lupus has been completely dormant for over 8 years now. Generally a high risk pregnancy with SLE involves regular appointments at a specialist Maternal Medicine clinic. Your consultant should arrange this once you have told them that you're pregnant.

At the clinic they will take blood samples regularly to check how your disease is reacting and look out for any flare ups. I was told that with SLE generally pregnancy tends to reduce the risk and severity of flares during the period of you being pregnant but increase it in the period immediately after you have the baby so they will be keeping a very close eye.

You may also get an early scan and certainly regular growth scans (so probably around 7 scans in total rather than the usual two). Whether or not you have a higher risk of miscarriage depends a lot on what your specific antibody profile is. I think the presence of antiphospholipid antibodies is particularly linked with that.

Many women with lupus have a perfectly healthy pregnancy and a healthy baby with no issues but they will be very careful with you especially if it is your first. My consultant actually described pregnancy as the 'stress test' for lupus. I had a completely problem free first pregnancy and have now been discharged to a consultant in the local hospital rather as they do not really expect problems the second time round.

:D

Wow!! Thank you so much for all of that information :-D
They did my blood tests about 6 months ago to test if I had certain antibodies or whatever in my blood that would increase my risk of miscarriage and they all came up fine. He recommended I take baby aspirin for the first 12 weeks anyway to be on the safe side.
I happen to have an appointment on Monday to see the specialist again with my husband so look forward to him talking me through everything and working out my care plan. I'm comforted by the factill be seen regularly and closely monitored. I can imagine most women would love to have that kind of treatment during their pregnancy - especially their first!

How was your labour and delivery? Obviously you have no comparison to 'normal' people haha but do you think what you went through sounds any worse than regular labour and birth?

Thanks again for all the info! Xx
 
I had my first at 41+2 weeks. The labour was spontaneous (I wasn't induced or anything) and I had a hospital water birth on gas and air around 2pm and went home about 6-7pm that day.

So nothing terribly exciting happened and I think it all went really quite well. Hopefully I'll have something similar with baby number two although if labour was a bit shorter (it was a very looong seeming 16h!) I would be even happier.
 
I dont have a labour plan as such but i am hoping to get in the birthing pool at sum point as warm water helps my joint pain. Up to about 24wks i have felt ok pain wise but lately i have to admit it can be very painful esp in eves after a long day working. Not that i have to worry about that after tomoz as im being made redundant. I am very worried the pain is guna get worse towards the end and that the labour will b awful but im guna talk to my mw about this nearer the time.

Michelle. x
 
HI girls! Do you think it would be ok to buy low dose aspirin and take it without seeing my doctor? I can't get an appointment for a while and want to start straight away. X
 
HI girls! Do you think it would be ok to buy low dose aspirin and take it without seeing my doctor? I can't get an appointment for a while and want to start straight away. X

I'd hate to say BUT I do know that certain parts of the country prescribe low dose aspirin as standard to women to help prevent pregnancy. Most doctors surgeries you can ask your doc or a nurse to give you a call back and have a five min ap on the phone. Try that maybe hun?
 
Hi there - I have SLE and RA with Raynauds too but had my LO in Jan 2012 at the grand old age of 41 !!

Unfortunately I had a rotten pregnancy and was one of the rare cases where pregnancy irritates the SLE but from what I can gather it isn't the norm. I did have a CS but that was an informed decision made with the consultants involved - LO was 10lb 1oz! My recovery from the CS was remarkable and in the immediate months following the birth my SLE was in remission. I'm now on another supervised med break to see if another miracle can happen!


Speak to your midwife/doctor and your consultant and NP if you have one before taking anything. My RA NP was particularly helpful and supportive.
 
Hi there - I have SLE and RA with Raynauds too but had my LO in Jan 2012 at the grand old age of 41 !!

Unfortunately I had a rotten pregnancy and was one of the rare cases where pregnancy irritates the SLE but from what I can gather it isn't the norm. I did have a CS but that was an informed decision made with the consultants involved - LO was 10lb 1oz! My recovery from the CS was remarkable and in the immediate months following the birth my SLE was in remission. I'm now on another supervised med break to see if another miracle can happen!


Speak to your midwife/doctor and your consultant and NP if you have one before taking anything. My RA NP was particularly helpful and supportive.

I'm sorry but I am new to pregnancy forums... I don't understand the code haha what do the following mean:
LO
RA
NP
Thank you! Lol

I do worry about recovery from a CS because I had routine 24 hour surgery last year (most people back to work the next day) and I was in hospital for a week and on bed rest for a further 3 weeks lol but also worry how my body will cope with natural birth too lol seeing my specialist at St Thomas' Lupus Clinic on Monday - looking forward to that, find out a bit more!
Did you get extra scans?
 
RA is rhumatoid arthritus, LO is little one I think! xx
 
I don't have either, but I was high risk for other reasons, mental health issues, family history of spina bifida and I developed pre eclampsia in tri 3 just being some of them!

I'm guessin you haven't had a booking In appointment yet with a midwife? they'll be able to give u more info but I'd assume you'll be under consultant care, this means regular check ups with a consultant as well as with a midwife, they normally check bp, hr, measurements of bump and baby heart rate from tri 2 and will check things to do with your conditions as well, you may also have extra scans to check the baby's development more regularly, again your midwife and consultant will be able to tell you alot more as appointments are often tailored to your needs and your conditions
 
Hi there,

I got diagnosed with fibromyalgia after the birth of my lil one 3 yrs ago and i'm currently 31 weeks pregnant again, you will probably have to attend more appointments with a consultant @ hospital instead of your general local antenatal clinic as i have had constant appointments every few weeks but for myself this is because of alot of other factors as well like SPD(symphisis pubis disfunction),low lying placenta,also my muscles have totally given up from my waist down so have to rely on a wheelchair as was unable to walk properly,....

To plan ahead you may need to see a physio regularly later on so make sure you have a good one as their support can help greatly when things start to become a little loose, also i have to attend the anaesthetist to discuss options for birth and pain relief so they may do the same for you so you are prepared, but because of my fibro they have suggested inducing me early on as it has been pretty hard to cope with this time round but not every person with fibro suffers, some find their symptoms lift completely till after the birth .
 
Hi there,

I got diagnosed with fibromyalgia after the birth of my lil one 3 yrs ago and i'm currently 31 weeks pregnant again, you will probably have to attend more appointments with a consultant @ hospital instead of your general local antenatal clinic as i have had constant appointments every few weeks but for myself this is because of alot of other factors as well like SPD(symphisis pubis disfunction),low lying placenta,also my muscles have totally given up from my waist down so have to rely on a wheelchair as was unable to walk properly,....

To plan ahead you may need to see a physio regularly later on so make sure you have a good one as their support can help greatly when things start to become a little loose, also i have to attend the anaesthetist to discuss options for birth and pain relief so they may do the same for you so you are prepared, but because of my fibro they have suggested inducing me early on as it has been pretty hard to cope with this time round but not every person with fibro suffers, some find their symptoms lift completely till after the birth .

Thank you hun.
Yeah my lupus seems to have remained in remission but my fibro is definitely flaring. I do worry about the Kate stages of pregnancy for that reason.

Have now seen my specialist in London and know I'm going to be monitored closely throughout the pregnancy. Am seeing the consultant soon so will ask more then.

Have you found your fibro particularly bad then? What kind of physio have you been doing?
 
oh god yeah my fibro was pretty much bad to begin with with very poor mobility, but since about 12 weeks it flared up to the extent that i just dont have any good days at all, but when you live with it every day you kinda get used to the aches and pains ect the struggle is the problems it caused with my pelvis, i went to see the physio due to having SPD and pelvis kept moving out of place due to muscles softening up very very early on ( about 16 weeks) but the last time i seen her thinkin i needed my pelvis shifted manually back into place which is what i had to get done regularly) i got told there was nothing she could do for me as the fibro has actually caused the muscles holding my pelvis together to just give up giving me no control at all from the waist down,hence the wheelchair now,but i'm on baby number 5 so doesn't mean everyone will have same problem with fibro just i was unlucky enough for things never to have healed from last baby unfortunately, if you start to feel the aches and pains at any stage see the physio straight away and make sure you get every bit of help as soon as you can like support belts even crutches if it helps take the weight off in later months it will help alot and dont be ashamed to pester them as often as you need to :)
 

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