Any reassurance about ttc if I may have sjrogrens syndrome?

Hi Atomic

I think I remember you mentioning about having this yourself, I stupidly googled complications during pregnancy such as fetal heart block and now I've got myself quite nervous.

I'm going to ask my dr about being checked for this because I've been struggling with very dry eyes, mouth,
raw throat, vaginal dryness and dry cough for last 9 months. Chest x ray came back normal. I did see a rheumatologist a couple of years ago but back then my main issue was dry eyes and joint pain. I had loads of bloodwork done everything came back negative for RF factor, inflammatory markers, ana markers and lupus which was reassuring, I was discharged with a fibromyalgia diagnosis. But I dont know if my blood was tested for antiautobodies specific to sjrogrens.

Do I need to hold off ttc while waiting on getting this looked into(if I'm not already pregnant this cycle)or do you think it's still ok to keep ttc? My skin conditions seem to all have gone into remission since starting the pcos diet, and my general pain+ anxiety is under good control at the moment, I'm managing ok even after coming off Duloxetine. I would really like to keep ttc but wondered if you could put my mind at ease about possible pregnancy complications

Mum had her surgery this week and is recovering well😊

Thank you (sorry if this is a bit long)

Yes I do have Sjogren's. Usually they will spot something on the ANA markers if you have it (this is how mine was diagnosed) but you can have negative ANA and still have a positive for antibodies on a lip biopsy. But more and more they're not doing the biopsy anyway and just operating under the assumption that you have at least some type of autoimmune disorder going on if you have the symptoms.

Heart block is quite rare (and it's treatable in most cases) and the thing of it is, you could have had NO SYMPTOMS and still had it. In fact that's how a lot of women with SJS are diagnosed - they get pregnant and then find out after the fact. So there's no point in waiting till there's a diagnosis, as they'd not do anything any different, and it would have been far more likely you'd just have gotten pregnant without even knowing you had SJS anyway. Sjogren's is said to be one of the most common AI diseases and it may be that as many as 4% of the female population has it in some form. The vast majority of horror stories come from people who are very badly stricken and quite ill (as in, a threat to their lives, their organs are being attacked, etc) and not those of us who are lucky and have a milder case. In most cases, even though we are diagnosed after 40, we have had symptoms of it for quite some time previous and still had healthy normal pregnancies previous to our diagnosis so please understand that the scary stuff is very much skewed compared to what normal experiences are. I had my last three kids while I was definitely having some of my symptoms and they're all fine - but none of that goes into the stats on Sjogren's and pregnancies!

If you have the opportunity you may want to have them run an anti-phospholipid screen to see if you have blood that is clotting too easily. Some people with Sjogren's have this. Many others (like me) have actually the opposite problem, we bleed too easily and so you don't want to just take a treatment assuming that you need your blood to be thinned when you really would be making matters worse if you did that.

So I don't see any sense in waiting if you're ready to try now. It would be unlikely to change anything unless you'd not try on that basis. (and there's no reason not to try!!! I've had two other clients with SjS and they both had healthy normal pregnancies)

Thank you so much for your detailed reply, you always put my mind at ease. yes I will ask to get checked for the blood clotting as well. I definitely still want to have another baby😊 with having vaginal dryness would it be ok
to use a little lubricant for attempts? would it be better to use a little bit of a fertility one rather than something like sylk or ky?Dont want to use a lube that could make it harder to get pregnant, but using nothing just feels very uncomfortable

You have two options - you could use a very small amount of a normal lube and understand it might kill a bit of sperm, or you could use a very small amount of a sperm safe, conception friendly jelly. We have had good results using a minimal amount of sperm safe jellies as a lube for pink swayers. It's only in larger amounts that it seems to sway blue.

Thank you Atomic😊

Update

Waiting to see rheumatology, but I had an appointment with my optometrist today to ask about my eyes feeling so raw, she is referring me to hospital eye clinic to see about getting eye
plugs, she said my eyes are severely dry. She mentioned she thought I may have sjrogrens and was glad to here I'm getting it looked into.

She mentioned something though that I was a little worried about- that I should start eating flaxseed daily and take a cod liver oil supplement, I had mentioned we were trying to get pregnant. I thought I remembered that Flaxseed isn't the safest for ttc or pregnancy? Also wondering what your thoughts were about taking cod liver oil? Wouldn't want to start these if they aren't safe for pregnancy and may negatively affect my sway. I'd really appreciate your advice on this.

Thank you.

I have Restasis eyedrops and they're great. You can use them even if you end up not having Sjogren's, anyone with dry eyes can use them. They are expensive but my insurance covers them. you might want to try something like that before going with the eye plugs.

DO NOT use flaxseed. It isn't safe during pregnancy or when trying to conceive, and the thing is it doesn't work anyway. My doctor had me on flaxseed and then told me to stop taking it about 18 months ago because new research had proven it didn't work.

For the sake of your sway I don't want you on any of the oils now. I am wary of cod liver oil during pregnancy anyway as it has a lot of Vitamin A in it (you can use DHA or fish oil supps when pregnant but do not take more than 500 mg daily) If you feel you need something right away then we can do evening primrose instead (this used to be considered a blue sway supp but we got so many pink opposites I dropped it for pink)

Thank you Atomic,

If I did try the evening primrose when would I take it, for example Af-CD 14? Is there a dose you would recommend, I'll have a look into the eye drops you mentioned, and I will stay well clear of the fish oil supplements and flaxseed😊

Yes, when actively TTC you take EPO 500 mg from AF-O. When not trying you can take it all month. Don't take it during pregnancy.

Please note, I'm not really recommending this as this was originally a supplement for blue sways, but just that it is likely going to be less bad than some of the other options.

Thank you Atomic, I'll think it over😊