Sound familiar to anyone??? - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Sound familiar to anyone???

fizzymoon
fizzymoon

4 miscarriages, 1 prem baby 32 weeks, 4 dvts, positive blood tests for lupus anticoagulant and aps in past although also had negative tests since. Always stuffed with unexplained fatigue.

Been on warfarin for last 6 yrs but inr remains very erratic target range 2 -3 but swings from 1 to 6! Have to have blood tested every 2 weeks.

Now got 10's of dark red circular patches on legs and stomach.

Exhausted, dizzy and frequent headaches since last dvt in jan due to inr falling to 0.9.

Is this due to aps or could I have lupus sle or both?

12 Replies
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Fizzymoon we can't diagnose but those symptoms could be related to APLS.

Do you have a medical "team" watching over you? Many of us take Plaquenil to help with the fatigue and joint pain. Perhaps have a chat with your medical team and ask about Plaquenil if you aren't already on it and maybe also ask for a trial of heparin to see if that works better than the warfarin for you.

I'm really sorry that you have lost babies. This disease can be very cruel and it sounds like you have had more than your shares of the challenges it can throw at us.

fizzymoon
fizzymoon in reply to tassie

Than you for your reply Tassie I was on heparin for 2 months due to my last dvt but haemotologist says warfarin better just had new thromboplilia screening done and seeing him again in 3 months. He also mentioned a new anticoagulant that would not need regular blood tests but said that there is no antidote for it yet. This is the only Dr monitoring me should I ask to see a rheumatologist?

Thankyou for your reply. I'm in North West England I know there are aps specialists in Manchester and Liverpool but not sure how I get a referral to see them.

MaryF
MaryFAdministrator in reply to fizzymoon

You need to convince your GP to send you, you can always give them some medical papers or the link to the charity, let us know if you need help finding the specific information, sometimes if there is a block people self refer privately. But it will be in your GP's interest to have your care managed by an expert who will in turn manage them also in terms of how things are supposed to be in terms of your medication and monitoring. MaryF

fizzymoon
fizzymoon in reply to MaryF

Thanks MaryF not sure if / why I would need to see rheumatologist are they the right specialist re aps bit confused as I thought it was a haemotologist who dealt with this. Which are the experts listed on the Hughes website? Would they do more tests and if so what would they be testing for?

I really appreciate your help. Fizzymoon

MaryF
MaryFAdministrator in reply to fizzymoon

some are rheumatologists and some are haematologists it is a matter of choice and their specialist knowledge, I am sure people in your geographical area will have some good info for you. MaryF

no answers, just comments. I lost two children late in pregnancy over 30 years ago and I am sad that it is still happening today. Also I personally would feel very poorly on such a low INR range. Mine is 3.5 to 4 and if it slips to below 3 I am meant to use heparin injection. This is direct advice from the haematologists at St Thomas's who I see every six months. I also self test at least once a week and adjust my dose accordingly. It also makes me feel more in control of the disease rather than the other way round! I have lupus but with APS as my primary condition. Good luck with the referral. I was referred by a neurologist at my local hospital. It was all a bit too late and damage has been done but I am so grateful to be able to talk to people who understand the condition.

I do hope you have had your Thyroid levels checked and re-checked? An underactive thyroid gives rise to similar symptopms and often goes hand in hand with APLS and visa versa. Thyroid disorders (both underactive and over active) are known to cause both fertility problems and can cause repeated miscarriage if mis diagnosed or poorly treated. Just google 'Thyroid' and 'Miscarriage' for lots of reliable sources of information.

The ignorance and poor management and diagnosis of thyroid is staggering so if you have had blood tests checked and been told 'your levels are normal' please ask your doctor for printouts of your results with reference ranges. Ideally you should have been tested for TSH, FT4, FT3 and thyroid anti bodies. You can post your results on Thyroid UK Healthunlocked community for advice from members.

A close friend of my daughter suffered multiple miscarriages and a premature birth (also linked). Her thyroid had been checked and dismissed as a cause just using the TSH measurement (which was high but 'in range'). This measurement is notoriously inaccurate but not recognised as such by the medical profession.

It was never re-checked or more reliable test done. After posting to Healthunlocked and learning about this, she got her test results and insisted further tests were done. To cut a long story short, she fought hard and was prescribed thryoid hormone replacement (thyroxine) and the very next pregnancy went to full term resulting in a bueatiful healthy daughter. Her symptoms of fatigue and generalised aching, which she put down to the stress of lost pregnancies resolved on the medication too.

Wishing you all the best xx

Low iron level can also cause fatigue, poor memory and a whole heap of other symptoms that can also be associated with APLS so worth having those checked too. I have noticed that many here have issues with low iron. Come to think of it low iron can be linked to gluten intolerance or coeliac disorder so it can all interlink.

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I often wonder why they simply say, "single autoimmune syndrome" including all of these autoimmune conditions. Too many overlaps across these conditions which are named differently.. in particular, lupus, aps, hashi, sjogren's, RA...bet sharing a host of similar/the same genetic factors covering these conditions.

Thanks everyone for your kind and informative replies.

I should state that my daughter born at 32 weeks and needing intensive care and ventilation is now a strapping 12 year old and in great health. After repeated miscarriages I went on to have a small but healthy baby boy who is 6 and full of energy. I feel very blessed to have them both. Should they be checked for aps / lupus anticoagulant? I am adopted and have no knowledge of my family medical history so don't know if this would hold any clues?

Also wonder why I have only started to feel the physical symptoms recently even tho I have clearly had this a long time. Is this common?

Thanks again everyone

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fizzymoon

I had symptoms as a child. Got somehow better as grew up, then had a nose-dive at menopause.

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