Hughes Syndrome - pregnant or not, come and talk

[confuddledDOTcom]

I'm pregnant with #3 since diagnosis. I was quite fortunate really that I had a baby survive a very premature birth (20 weeks) so they knew something was wrong with me and I didn't have to wait for more miscarriages first. I'm currently taking Clexane and Aspirin, normally only on Aspirin.

I have Raynaud's, suffered from TIAs since I was 13 (although I suspect earlier than that) and now it looks like fibromyalgia may be added into my list, I also get the annoying day to day symptoms.

My youngest is about to be tested at 2 years old as she has hypermobility, hypotonia and (the one that's got their interest) it's looking like she may have Raynaud's.

So come and talk, what do you have, what are you on, how did you find out etc?

Hi Confuddled. Congrats on your pregnancy! How are your thighs? All bruised and sore?

I have Hughes and Lupus. I found out about the Hughes because I had three miscarriages and was then sent for testing. (Family history and my migraines suggested it before that but, no, I had to wait until I'd notched up three of them. )

I then went on to have two dc. Both pregnancies I took aspirin and heparin and was induced at 38 weeks (because it was standard practice, rather than because of any problems). Both dc are fine.

The lupus I found out about later. When ds was small (he's my youngest) I woke up one morning with painful feet. The pain just spread until I was in agony, with swollen joints and very, very tired. Several blood tests later I was told it was 'probable mild lupus'.

Not sure if I now get Hughes symptoms or not, but I do get occasional migraines and unless I'm on the progesterone-only pill I get ridiculously heavy periods. I now take aspirin daily. (Well, I did until I ran out - must go to pharmacy!)

ooo hi hi!
I have Hughes too. Discovered when I nearly died of multiple blood clots in my lungs. I take a large dose of warfarin daily when not preggers and when I was pregnant took clexane daily until 20 weeks and then twice daily from then on. Aspirin from 20 weeks as well. Scans every month and induced at 39 weeks.
I feel fortunate to have found out about having Hughes before I starting trying to have children. i honestly think nearly corking it was worth that.
About to start ttc number two in the next few months - appointment with haemotologist in a few weeks and then after that - all systems go!
Confuddled - what do you take when not pregnant? Alwaysworthchecking - will you ever have to take more than aspirin to control your Hughes syndrome?

Hi
This looks like a thread for me! My first post on MN but I do lurk around as find other peoples stories so helpful. This is my story.....
I have primary antiphospholipod syndrome - diagnosed after quite severe DVT and PE in January last year. Am TTC #1 and sadly MC at 7 weeks at the beginning of Feb. Was especially heartbreaking as had seen a heart beat only 2 days before, I also have endometriosis so they suggested I have an early scan as higher risk of ectopic.
Was on warfarin until BFP and then consultant switched me to fragmin and baby aspirin. Because we wanted to try again straight away after MC have been kept on both the fragmin and aspirin. Is ok but tummy is getting quite sore from the 2xdaily shots!
It feels like we?ve been trying forever but has actually only been since july last year, I had a mirena coil for 6 months after I started on warfarin to allow my body to adjust and also so they could do all the diagnosis tests without me being pregnant.
I think they will increase the dose of the fragmin when i get a BFP (they were about to when I had the MC).
It?s great to see that you have all managed to go on and have successful pregnancies with Hughes.

I'll post properly later. Just wanted to say, you don't have to just use tummy you will get sore quickly. Try your thighs, bottom and high hip. Basically all the places we women have because they're where the fat goes! I wouldn't do your arms though unless you're a larger lady as they're not usually fat enough. I'm running out of places at the moment as fibromyalgia is making my legs too tight and my bump is pulling belly fat tight.

Thanks confuddled, for some reason I thought tummy would be easier and less painful. Plus that was the only place I was shown how to do it. Have started on the thighs and it is fine. I was getting very sore and bruised!