I'm new :): I was diagnosed with APS... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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I'm new :)

RubyAndBlue
RubyAndBlue

I was diagnosed with APS (and possibly a connective tissue disease) in November 2018. It was discovered after a miscarriage. I am glad I found this online community, I have so many unanswered questions and issues , but my biggest problem is brain fog. I am a software developer and there are days that I'm just not able to stay focused, so hardly get any work done. I had this problem before the diagnosis, I always thought it was just laziness on my part :)

I am South African, but I work and live in Angola.

11 Replies
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So sorry about the image, I thought the link was to upload a profile picture!

HollyHeski
HollyHeskiAdministrator

Hi and welcome.

It can be daunting at first, with so much to learn.

Key here is to have a Hughes/APS specialist and to get onto some anticoagulation meds. If you look at the top right hand corner in pinned posts we have a list of specialists -

Also have a look at our website ghic/world, some really useful information.

Ask away, we are here to share experiences and give support. Hopefully you will get some contacts from Angola and South Africa.

Brain fog, is a very common symptom and should improve once on anticoagulation. Also worth getting your B12, ferritin and thryoid checked. My colleague MaryF ill shortly give you all the information on this.

Hi HollyHeski,

Thank you so much for the information. I am on a low dose of aspirin(81mg) since the diagnosis. I was on plasmoquine for about 3 weeks, then the rheumatologist in South Africa told me to stop because I reported symptoms that worried me. I am currently going through a bad phase, I went to the hospital on Monday and the doctor here told me to start with the plasmoquine again. She said it will stabilize the immune system and I should feel good again. So I am crossing my fingers and hoping for the best.

HollyHeski
HollyHeskiAdministrator
in reply to RubyAndBlue

Hi, what were your side effects? Ive not heard of this drug but have looked it up and seems popular in SA.

I think the equivalent drug here in the UK is Hydroxychloroquine, (Plaquenil)?

Many of us are on this, reduces inflammation and helps ease pain. Also has mild anticoagulation. There are side effects and I wonder if these are the same?

Really hope you feel somewhat better soon x

I could not remember what day of the week it was for an entire week. One day I was walking, when I crossed the road, for a split second, I didn't know where I was. I was just doing weird things. One day I poured milk into a cup, I turned away for a few seconds to type something on my pc, I turned back and looked at content of the cup, thought it was water. I got a big scare when I drank it and tasted milk.

MaryF
MaryFAdministrator

Hi and welcome, no worries about the uplifting picture. Firstly, a lot of us arrive on here with brain fog, having your medication sorted, (especially the higher INR some need with this condition if on Warfarin, which is why it is important to see a consultant who fully understands this condition, not just half of it.

We have quite a few specialists over on the right hand side under 'pinned posts', also do take a look at our charity website: ghic.world/ More specialists on there, plus a host of useful information which will continue to increase.

Brain fog is also made worse by eating gluten, (if you are sensitive to it), also a lot of us order our own Thyroid tests which also include Vitamin D, and live B12 testing, any of this being out of kilter will worsen brain fog! Please feel free to ask questions, a lot of our members on here have very interesting histories in terms of their own diagnosis.

RubyAndBlue
RubyAndBlue
in reply to MaryF

Hi MaryF,

Thank you so much for the information. I will do the suggested tests. My diet is not good. I hardly have appetite. Its very hard to find fresh fruit and vegetables that I am used to here in Angola. I have been here for one and a half years and I am still not used to the cuisine.

lupus-support1
lupus-support1Administrator

Welcome!

With good wishes,

Ros

Thank you :)

Hi RubyAndBlue

Welcome you will get good advice and support on here. Brain fog is a problem, my fridge is my saviour it is full of sticky notes. If you are feeling blue have a read of the patient patient i posted yesterday Thurs.

Regards Dexters

RubyAndBlue
RubyAndBlue
in reply to dexters

:) Dexters! I finally read your post. It made me smile, thank you.

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