Advice for My wife with Lupus SLE & pregnant

[Deanozoff1]

Hi guys & girls I'm looking for some advice on behalf of my wife who has lupus SLE.

My wife is from Indonesia and has been receiving treatment from a doctor in the know for around 2 years now. We are currently waiting for her settlement visa being approved for the UK and have just found out she is pregnant! Unfortunately we have already lost a baby (early stages) we think because of her lupus.

She has visited her doctor today to talk through her pregnancy and has been advised this is very dangerous for mother & baby, however the doctor did say the treatment in the UK would be much better than Indonesia.

We have read that people can have babies with lupus SLE but we are unsure of the complications involved? My wife has her Lupus under control as she takes a medicine called CELLCEPT & Methylprednisolone everyday with vitamins, she eats very healthy, she is keen on going to the gym most days ( not now since pregnant) .

Unfortunately her doctor has not had any experience with an SLE patient that has successfully had a baby. We do not think she knows 100% the best advice to give to us. We are desperate for our own baby but we want this to be safe for both mother and baby.

Please please can someone give us advice what the best thing to do is? Anybody with past experiences or what the NHS do to help the pregnancy process.

We are really worried about everything.

Any advice would be greatly appreciated thanks

Dean

[manjumanu]

Hi...this is manju..i am a lupus fighter and had a sucessful pregnancy ..now daughter is 9 months old..pls check antiphospholipids antibody..dsdna..make her happy..avoid food from outside..eat healthy food which include more fiber...everymonth do a bloodtest which includes her cbc esr sgpt sgot sr.creatinine....visits to the obstretician..i had prednisolone ..glyciphage...hydrochloroquine and tacrolimus ie immmunosuppresive...

[Deanozoff1 in reply to manjumanu]

Hi manju thanks for your reply.

We have learned that the cellcept is not good for the baby but are advised to continue this, we are not sure what medicine should be taken during the pregnancy as the doctors here are unsure I think. Is this all the medicine you took during pregnancy? I can show this to the doctor tomorrow to ask her advice or if my wife can take this instead of cellcept.

[manjumanu in reply to Deanozoff1]

I have taken tacrolimus ,prednisolone,folic acid,calcium,hcqs,vitamind supplement, glyciphage as i was diabetic,iron tablet and frequent monitoring of fetus..checking sle profile, checked 2d echo of baby to see any fetal heart defects,i was operated at the eighth month of pregnancy to prevent further complications ..all these medication which i took was safe during pregnancy..but after delivery breast feeding was not allowed as it can transmit to baby through breastmilk

[Deanozoff1 in reply to manjumanu]

Ok thanks for your help. We went to find this out today but cannot see anything yet, we think she could only be 2-3 weeks maybe we are unsure.

We will look for an alternative to the cellcept ASAP as this is going to increase the risk of miscarry again. Can you suggest the best immunosuppressive to take whilst pregnant? We can see if they have available in Indonesia.

[manjumanu in reply to Deanozoff1]

Immunosupressive i took was tacrolimus

[manjumanu]

How many months is ur wife pregnant?

[Paul_Howard Partner LUPUS UK]

Hi Dean,

I think you may be aware of this from your comments below, but Cellcept (Mycophenolate Mofetil) is dangerous in pregnancy. Although there is little available data, there have been major abnormalities documented in babies exposed to it.

We are not medically trained here so cannot advise on the best course of action for your wife. I would suggest that she needs to be seen by a lupus specialist as soon as possible so that they can advise on the safest path.

More information is available in our booklet, 'Lupus and Pregnancy' which you can download from our website at lupusuk.org.uk/publications/

[Deanozoff1 in reply to Paul_Howard]

Hi Paul thanks for your message.

Yes we are looking in to the next best thing for the pregnancy. Unfortunately the UK embassy have my wife's passport so she is limited to Indonesia just now. A lupus specialist may be hard to find in Indonesia, maybe try Jakarta.

on the plus side she is very sensible with her lifestyle so we are hopeful this will stand her in good stead until we can recieve the proper treatment she requires.

[SLC03]

Congratulations. I have also had a successful pregnancy and was actually the healthiest I've ever been throughout my pregnancy so cut right down to just hydroxy. I guess it really depends on her symptoms and what she is having to take to control it. I had to have extra scans, blood tests etc just to monitor and was told I needed to have my baby in a hospital as the baby can sometimes be effected however we were both fine amd out within 5 hours. I know this isn't a very helpful but I have a very happy and healthy 1 year old so there is hope of successful and healthy pregnancy!

Good luck to you both x