New member

[SteveRN]

I am a new member only diagnosed with APS in April following discussion with Neurologist over the phone when confirmed 2nd set of bloods. Two weeks ago had telephone consult with cardio re closing PFO who said that they were not going to close it and that there was no risk of me having another stroke, I was wondering if he had seen my history. Next day I got a phone call from GP saying the neurologist was converting me from Clopidegrel to Warfarin. INR currently 2.8 (target 2-3) still getting headaches, joint pains, dizziness and rash with intermittent livedo, due to see dermatologist next week and neurologist the week after. Headaches I am well used to but the rash and joint pains are new to me any advice

[MaryF Administrator]

Hello, and welcome, where are you located? Are you and your GP being guided by a recommended Hughes Syndrome/APS Consultant? We have global ones on our charity website: ghic.world/ and also for just the UK, on the right hand side of the this forum under 'pinned posts' MaryF

[SteveRN in reply to MaryF]

Hi Mary thank you for your response I live in the South West UK I am not sure if my neurologist is a recommended Hughes syndrome/APS specialist as he is new to me but he does have other APS patients. My previous neurologist was the one who initiated the tests before he left he was a friend and ex colleague as I worked with him before I had my stroke.

[HollyHeski Administrator]

Hi, welcome, we share our experiences and give support where ever we can.

Sadly its after having a blood clot, when the damage has been done, that we find out about Hughes/APS.

I'm glad your neurologist has diagnosed you, is he an APS specialist? I ask as we usually find a haematologist is better suited for getting the right balance of medications that suit us individually.

Saying that INR is targeted between 3-4 for arterial clots (strokes etc). Target 2-3 for venous clots.

So your headaches, dizziness etc. could be down to not having your blood thinned enough?

Have a look at our charity, as it will give you more information. Www.ghic/world

And again welcome.

[SteveRN in reply to HollyHeski]

Hi thanks for the advice I have been looking at the info on the charity, I have been referred to a haematologist but there are no available appointments at present so its just a case of waiting at present. SteveRN

[HollyHeski Administrator in reply to SteveRN]

Not sure where you are in SW, but Im told theirs a really good heamatologist at Bristol and Taunton.

If you look at our pinned post (top right) it gives a list of specialists per area.

Not sure I understand no available appointments, once referred, you tend to get your appoitment within 16 weeks but its usually a long wait until the date.

[Ray46]

Sounds pretty standard, I was on clopidogrel until APS diagnosis, and until they'd agreed what to move me to. Now on warfarin target 2-3. Don't know about closing PFO, they didn't find one in me (not for lack of trying), I imagine it depends on the exact details of the PFO they found. Guessing it was probably the neurologist who sent you off for PFO scans post-stroke, I would ask them if they have an opinion on what the cardiologist said or if maybe they think you should perhaps see another cardiologist for a second opinion.

Everything else, it depends. May be APS, or may not, may also be reaction to drugs, including warfarin, or something else. If you haven't already, think back and make notes on when things were changed and when symptoms changed/appeared. Track symptoms now alongside INR - if they are related to APS or warfarin they should change if INR changes. With a 2-3 target you may not be high enough to eliminate them - some people need 3-4 or higher - but even so you will probably, sooner or later, end up well over 3 anyway (I've been around 4 more than once, but that is in 3.5 yrs on it), and you can see if the symptoms lessen. If they don't, they aren't APS (or not typical APS anyway).

Then between GP and specialists you need to carry on the search for what else is causing you problems. Lots of us don't only have APS, it typically comes with several fun friends. Thyroid (don't take just the TSH test as a definite negative, may need to pay for more extensive tests) and Sjögren's are two common ones. Also chronic vitamin deficiencies.

[bfairchild]

Not sure where in the south west you are but if you come under the Bristol Royal Infirmary I don’t believe they have any APS specialists But both the Haematology consultants are very good , Amanda Clark is very knowledgeable about the condition and we have found her excellent.

With APS stroke is always a risk and I would be concerned about any Doctor telling you you are not at risk.

Cheers Brian

[Stereolover]

Hi SteveRN,

I hope you aren’t as confused as I am.

I’m terrified at the thought of developing a blood clot. My mum died because of it and I haven’t walked for 13-14 years due to MS. To be honest I don’t know what I actually have but hope to find out more tomorrow during a telephone consultation.

Can I ask what PFO means please because I’ve never heard/seen it before. My neurologist and MS nurse think I have APS whereas a GP told me I don’t but have Lupus. Bewildered is an understatement.

[SteveRN in reply to Stereolover]

Hi a PFO is a hole in the heart I never even knew I had it until they were investigating what caused my stroke, before which I was fit and healthy used to run marathons and frequently worked treating divers with the bends in the chamber. It’s easy to get confused when you get conflicting information but stick with it and hopefully you will get some answers soon good luck with your consultation. I know it is easy to say but sometimes just talking to people help and that’s what we are all here for to help each other a little support goes a long way.

SteveRN

[Stereolover]

I’m so glad I found the wonderful people here!

Wow a hole you didn’t know of! I wonder if that’s common as many other things only come to light after something has happened.

My partner’s sister is a fitness instructor and hadn’t long climbed Mt Killamanjaro when she had a stroke several years ago. She’s fine now thankfully but it was such a shock as you know too well. Take good care.