March's Topic of the Month - Pregnancy & Lupus (We want to hear your tips and experiences)

[Paul_Howard]

Our Topic of the Month discussion for March is 'Pregnancy & Lupus'.

Lupus is a disease which predominantly affects women and often first presents during the childbearing years. In the past women with SLE were discouraged from pregnancy due to concerns about the effects of the disease on the mother and baby. However, medical practice has changed and in many cases, with close supervision and planning pregnancy is possible.

We want to hear your experiences of pregnancy with lupus. Did you have extra check-ups and monitoring? Was your treatment adjusted during the pregnancy? Do you have any advice for anyone with lupus considering/planning a pregnancy?

We would like to hear all of your tips and experiences and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email [e-mail]

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

[Jhpc]

Hi Paul,

I’m not sure if this will help.

I’ve only recently been diagnosed with rheumatoid arthritis and lupus, I am now 61. One of the questions my neurologist asked me of my medical history was if i had any past miscarriages, I’ve had 2, in between my first and second son.

Before becoming pregnant for the last time I was put on a course of medication which obviously helped.

I was informed I have probably had lupus all these years, which I was unaware of.

[Paul_Howard Partner LUPUS UK in reply to Jhpc]

Hi Jhpc ,

It is not uncommon for someone with lupus to experience multiple miscarriages. Do you know if it was a blood-thinning treatment that you had during your last pregnancy?

[Jhpc in reply to Paul_Howard]

Hi Paul it was a very long time ago but I’ve a feeling it was some kind of vitamin tablets that were prescribed, would that be right.

I was put on a course of these tablets

before I became pregnant.

[someone1234]

This is very interesting topic. Whenever I ask doctors they always tell me you will have no problem and you can get married and have children you just need to coordinate with your Rheumatologist before and during pregnancy. One time I was about to get engaged but before official engagement we thougt that the grome should know about my Lupus and then he changed his mind because of Lupus. But for the future if someone were in my place what would she do? Because in the Arab culture we can only get married, we cannot have relationship outside the marriege circle. So marriage is the only and only option for us, therefore I should explain all the postive possibilities about pregnancy if I am going to tell my future husband. I would happy to hear from this thread.

Thanks

[Swifty77]

Hi - here's my story in brief....I've had lupus type symptoms for quite a few years, initially the rheumatologist was calling it mixed connective tissue disorder, but more recently has become much more lupus-like. We've been trying for a baby for some time - the first attempt which involved hormonal stimulation resulted in a big lupus flare-up (and no pregnancy). Once I had recovered from that, we tried IVF and the first attempt was successful. I am now 26 weeks pregnant. Going into the pregnancy, although the lupus wasn't technically in remission, it seemed to be well controlled, and the only medication I was taking was a low dose of hydroxychloroquine. I was put under the care of a high-risk obstetrician and advised to start low dose aspirin and blood-thinning (clexane) injections from 12 weeks. Around January I started to get really anaemic and urine tests were showing very high levels of protein. In Feb I was referred to a renal specialist who diagnosed lupus nephritis. (My kidneys had never been involved before when I had flare-ups) At this point my legs and feet were also starting to get very swollen and uncomfortable. I was started on 3 days of IV steroids, then tablet steroids, azathioprine, tacrilimus and a higher dose of the clexane injections and hydroxychloroquine. Nothing happened at all for the first 2 weeks, in fact the protein levels in my urine got higher, but then things have gradually started to get better since then. My anaemia has got slightly better so I'm feeling less exhausted and out of breath, the swelling in my legs and feet has almost gone and the levels of protein in my urine have dropped. Still being carefully monitored, having growth scans every 2 weeks and they check the fetal heart rate every week. The baby seems to be doing absolutely fine! I had a scan of the baby's heart a couple of weeks ago to check for fetal heart block which is a small risk if you have lupus and have positive anti-rho antibodies - this came back clear..... They plan to induce me at 38 weeks....

I was hoping to be one of the lucky ones whos lupus actually gets better during pregnancy, but I think it may have been the oestrogen injections used in IVF that triggered it rather than the actual pregnancy.

Hoping that all this medication will keep the lupus under control and the rest of the pregnancy will go smoothly Be interesting to hear other folks experiences of lupus and pregnancy...

[Leave-me-alone]

What an interesting read.

I have been diagnosed for about a year now with Lupus now 39. Looking back I had lupus synonyms for many years but thought it was work related stress. I don't know if this is lupus related: - I got pregnant naturally when I was 31, unfortunately it was an ectopic pregnancy. We have been trying since. Three attempts of IVF between the age of 35-37 not been successful although I have great result of eggs each time. Found out I had lupus 38, I wish I knew before I paid for the IVFs. In someways I hope lupus was the answer at the same time I always ask why me.

[Paul_Howard Partner LUPUS UK in reply to Leave-me-alone]

Thank you for sharing your experiences. I'm not sure whether lupus is associated with a higher risk of ectopic pregnancies or not, although it may be possible. I'm sorry to hear that your IVF was unsuccessful. Again, I'm not sure whether this could be lupus related or not.