Systemic Sclerosis symptoms during pregnancy

[Redcurrant7]

Hi everyone,

I'm 3 months pregnant with my first child. Was diagnosed with limited cutaneous systemic sclerosis 5 years ago (Scl-70 and ANA positive) but had symptoms since I was 11.

I am lucky that my scleroderma is relatively mild with main symptoms being raynauds and every now and then GI issues which I treat with over the counter medication when it occurs. I have not taken any prescription medication and keep my raynauds in check by dressing accordingly and regular exercise (running, roller blading, Crossfit).

Since my pregnancy I have not had any cold fingers and feet at all which is very strange and actually makes me uncomfortable. I'm always feeling hot 🔥 similar to when it's nearly 38-40°C outside when everyone is struggling with the heat. I barely do any exercise anymore because it makes me feel even hotter and breathless.

Has anyone else experienced symptoms changes during their pregnancy?

[OldTed60]

Hi there. Firstly congratulations on being pregnant - that is exciting! I was only diagnosed 4 years ago when I was 56 but already had other pre-existing autoimmune diseases which I suspect I’ve had since I was little.

From experience pregnancy is a rocky road of powerful hormones and each pregnancy affected me very differently. First one there was colossal heat and vertigo and severe eczema from head to feet - not good. Second two were easier but all three defined by awful heartburn. Recently I’ve had hypermobile Ehlers Danlos and Mast Cell Activation confirmed as well as my autoimmune trio. The scleroderma dr thought it was all interconnected for me.

So my advice would be to try and remember your hormones are in a temporary (9 months is not long in scheme of things) disarray and autoimmune diseases such as scleroderma and others often relieve while other symptoms take their place. But the flood of pregnancy hormones is there to keep your growing baby safe and this maybe includes the temporary heat wave you describe, which sounds very like the one I experienced with my first gestation.

Best of luck! xx

[moo196]

congratulations 🎉I'd chat to your midwife who might be able to explain the physiology to you 🙏

[Cactus7]

Hi. That is so interesting. I'm fairly sure there is a hormonal element to autoimmune diseases. I just think that the research evidence isn't there... yet. Just look at the stats. Generally women, often in midlife.

I didn't have any issues during pregnancy but have in midlife. I was interested that you say some symptoms disappeared and some emerged.

I've had Raynauds since adolescence. Thought it was weird but not much else. It was better during pregnancy tho (22yrs ago). Got quite bad allergic rhinitis about 10years ago having never had hay fever or anything and had to take antihistamines throughout the year. I'm now in my 50's and about 4ys ago started having other symptoms which were initially thought to be sclerodeama (in 2020) but were later diagnosed as mixed connective tissue disorder and inflammatory arthritis. It was only during diagnosis that I realised I hadn't had any bouts of Raynauds or needed to take antihistamines for ages. 3 years later I still haven't had issues with either of these. Tho I still have generally cold hands, feet and nose.

I have on going issues with temp control but can't figure out if it's due to the condition, my age (57) or menopause. Possibly all 3 with an added bonus of side effects of meds.

I think you should def keep your midwife and rheum specialists informed of your symptoms so that they can monitor you and check for things like infections. Otherwise take each say as it comes. You have to do that in pregnancy anyway. And don't be shy to ask for what you need to keep you comfortable wherever you are.

Congratulations.... and thank you for your thought provoking post. Cx

[Nw6London]

Hi, congratulations on your pregnancy. How lovely. I was formally diagnosed with SSc in June 2022 after the birth of my LO, although I started getting very severe Raynauds in 2020. During that time, I was not medicated. Now, I'm on a course of mycophenolate twice daily to prevent progression.

A few things meant I was a high risk pregnancy. My raynauds subsided, as during pregnancy the woman's body temperature rises slightly, so that was fine. That said, after pregnancy, my raynauds has come back very aggressively with a vengeance. I'm now considered getting treatment as it really is relentless - I can't even wash my hands (with warm water) and not get it.

I also had to be admitted to the small baby clinic as the raynauds caused the blood flow from the placenta to baby to decrease. Its called high PI. I was at UCHL and was monitored quite closely. Scans weekly and calls with the rheumatology midwifery team. Baby was growing quite normally and 50th percentile and at my 20w scan, slowed to 5th percentile. Very scary, but we were in excellent hands with the small baby clinic and understood every decision at every step of the way. We asked questions and read a lot of medical journals. Lol. Make sure your midwifery team know that you have raynauds and you could be at risk for a high PI. This also meant that I needed to be induced at 37w. Baby was 2.545kg and otherwise healthy but he needed to be out bc the raynauds was preventing his growth and importantly blood flow to the brain.

Being high risk meant that the choice of the TYPE of birth was removed, ie I needed to be on the ward. No water birth or home birth etc. But I was happy with the safe delivery of baby. There is also a higher chance of having a CS too, but I chose not to know how dilated I was (that was the only request in my birth plan lol) as I didn't want the anxiety with everything else going on. Being in pain and knowing I was only 2cm, for example, something that I couldn't possibly control - so who cares. I wanted all the positive endorphins coming my way. 😁

Good luck with baby. Go into it informed and know that you're under excellent care. Feel free to PM if you have any other specific questions.