APS Advice

Hi. I tested positive for Hughes Syndrome 26 yrs ago. Due to inflammation & bleeding from aspirin & then clopidogrel it was necessary to stop them. My consultant hasn't checked my bloods to see where my levels are at, for at least two years or more, as far as i am aware. I get the impression that because my APS levels are on the low side, or were some years ago, the Rheumy is of the opinion that I am not at a high risk, Ive never had a clot, despite having migraine 4-5 days a week, numbness/pins & needles down one side of my face, sometimes down my arm & leg, difficulty with wording, sensitivity to light, fast moving objects i.e. TV, passenger in a car when driving fast, lightheadness, chest pain, pain at the back of my eyes, sometimes feeling light headless/dizzness. I also have purple lacy like rash, although something very faint after showering, more evident after a bath or if I sit in the sun or stand in the cold for any length of time. Is it common practice to have to wait to develop a DVT or a mini TIA if you have problems with medication and gastric problems and/or with low APS levels?

Many thanks for your advice.

9 Replies

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  • Hi there and welcome, you tell a familiar tale, it is quite clear you need some help with those symptoms, where are you located? Are you under a designated Hughes Syndrome/APS specialist, let us know so we can try and help you further. MaryF

  • Hi Mary. No I'm not under a designated Hughes Syndrome APS specialist. I see a Rheumy in Glasgow & unfortunately due to all the cut backs, I believe the specialist who retired only 3 yrs ago has been replaced by two registrars, although one of whom had been made a consultant just before she got the post! Fortunately I've not needed them until this past year and I am not impressed with what I would say, their lack of knowledge of both lupus treatments & APS plus associated conditions. They maybe good at maintenance, I think they are trained Rheumys & possibly good at their job in this field, with an interest in Lupus and associated conditions. But this is only my opinion.

    I am prepared to travel, even to Guys in London since I have a Mixed Connective Tissue Disorder. I have been keeping very well, in comparison to many on this forum, until things began to change over this past year health wise.

    Many thanks for your offer of help & advice. x

  • Please look at our pinned post on the right hand side that has specialists listed in your area and beyond, some self fund and go to The London Lupus Unit, at London Bridge, I have done that myself to get more help. MaryF

  • I think you need to ask your GP to refer you to one of the specialists of your choosing on the list in your area. You are entitled to a second opinion and to go to a Dr of your choosing. If the GP won't play ball you could go to that person privately or to another on the list further south, as we have others people recommend which would save you coming to London and keep that as a last resort.

    And no it is not necassary to have to wait to clot to get treatment....the whole point is to prevent that from happening!!

  • Many thanks, this is very helpful. I've had a look at the list of consultants for Scotland & checked them out on the website. I don't see my consultants name on the list, surprise surprise!

    Since I can't take aspirin or clopidogrel due to stomach bleed recently, should I request heparin even if my APS levels are on the lower side? I am seeing my GP on Tuesday & will ask him to check APS or refer me to a haematologist from the list kindly drawn to my attention by Mary. Thank you again for your help, very much appreciated.

  • I went almost 30 yrs without problem, didn't know I had APS at the time but later found out that I had, had all symptoms of APS...then I had full blown stroke be very aware, ask your medical provider ASAP for warfarin? Or another anti coag. You may also want to ask about enteric coated option of aspirin. That doesn't get absorbed in your stomach but intestines!

  • Hi. I agree totally with what my colleagues have advised you; to seek a referral to an APS Specialist in your area, from our pinned post.

    You could consider a private, self referral to one of Prof Hughes Team at the London Lupus Centre, as many of us have had to do.

    londonlupuscentre.co.uk/

    Good luck and let us know how you get on.

    Dave

  • Many thanks again for your advice. Will ask my GP for a referral to a specialist on Tues & if I don't get anywhere I'l just go the private route. Will keep you posted.

  • Thanks, good luck.

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