Sjögrens syndrome & pregnant

[Maips]

Hello,

I'm 36 and had been diagnosed with juvenile rheumatism at 12yrs old to Sjögrens syndrome after my first child (3yrs ago).

I've just discovered that I'm almost 5wks pregnant and have less of the symptoms than I previously did..! (Dry mouth, achey joints).

I stopped taking Hydroxycholoquine a couple if weeks ago, to see if regular exercise helped reduce the aches & because I generally don't like being on meds.

So I was wondering if anyone else out there had similar experiences with early pregnancy, exercising and Sjögrens.

I'd love to hear

[roxannacar]

No advice really apart from seeing your gp asap to refer you into a specialist if you were on meds recently. Sjogren s is a pretty rare problem so you're unlikely to find a huge amount of info.

[Maips in reply to roxannacar]

Exactly, even the doctors don't actually know about it in depth but I am looking forward to the extra care just hoping there's another rare woman out there to talk to. Thank you Roxanna 🤗

[Hidden]

Hi, I'm 16 wks pregnant and also have Sjogren's. I, however, have avoided medication so far. Were you not advised to continue taking the Hydroxychloroquine?

How are you doing without it?

All the best with your pregnancy

Jx

[Maips in reply to Hidden]

Hello J,

Congratulations! I hope your condition remains manageable without meds.

Typically, my rheumatologist has postponed my appointment (to Dec) again but he has previously advised it's safe to take Hydroxycholoquine during pregnancy. It's just my own paranoia, I tend to go with my gut feeling e.g. I took myself off Tocilizumab (for RA) as I felt zero effect after almost a year of self injecting and was then diagnosed with Sjögrens. Such a fine line..!

The flare ups are much less than before and if I can get by with less meds, I'm winning [Doc may not see it that way but we shall wait and see]. Combine that with less processed carbs and exercise, it has given me more energy 🤙

Thanks for getting in touch! Feel free to message if anything changes with your health. I wish you all the best 😎🤗