having suffered from PA for 20-30 years was sort of resigned to my fate of suffering from painful arms /hands and general lack of energy , anyway I then develop a Deep Vein Thrombosis in my calf muscle which I am advised could be caused by APS - also an auto immune response - was give Apixaban for the DVT which also had the effect of "healing" many of my ailments within a few weeks , Now 4 weeks on from apixaban , and on a reduced dose (2 tablets / day instead of 4 ) I am starting to feel the old pains returning .
Simple question has any one else had APS and what was their outcome - I should say I have yet to have APS confirmed - awaiting responnse from GP / Anticoagulant clinic .
regards
Written by
pj1954
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I was diagnosed with APS many years ago by Prof Hughes the founder of the illness. Do take a look at the APS site on here which I myself found to be of great help when I were first diagnosed. You will find the admins on the site are very knowledgeable. Just to clarify sticky blood is antiphospholipid syndrome or Hughes Syndrome named after the founder of the condition.
I am what is known as triple positive and monitored in London by a reputable hematologist. I am not able to take warfarin or heparin but seem to be stable on antiplatelet therapy of clopidogrel and aspirin.
I hope you dont have to wait too long before your appointment.
First of all you can’t just have APS, if diagnosed with it then you have it for life. You should have been tested with the three APS antibody blood tests - have they done that? And the second time must be 12 weeks apart from the first time.
Secondly, if they think you have APS then they should NOT have put you on Apixiban! If you look at the PIL it will state that it is contra indicated for people with APS. They should have you on warfarin or Heparin only until they can confirm your APS. All DOAC’s are contra indicated for APS as they failed the recent trials. You need to speak to your heamatologist about it.
Finally, I have APS and found that once on the right anticoagulant a lot of the daily symptoms I was suffering were helped. If you have it you need to be referred to an APS specialist to be monitored as you may need other medications that can help like hydroxychloroquine. As you have found out once you have one autoimmune condition others come along (I have 3!). I advise you to get your thyroid checked as that’s a common one to run with what we have!
Strange to relate, but for years I have taken cod liver oil but, since becoming infected with Lyme disease, I had started to be afflicted with serious cramps, mostly in my left calf muscle. In addition, I began to develop sciatica, mostly in right hip and thigh, but when really bad, left side as well. Very luckily, as I still travel a lot and had forgotten my meds bag. Within 3 days or so, all the problems had virtually gone and I have never had a problem since. I suppose my natural reaction was that it shouldn’t be possible, but it most definitely was. I have steered clear of anything similar ever since and had no problems.
My point is that there are ‘natural’ products which we imagine cannot possibly do us any harm, but we should remain very vigilant indeed.
Yes I was diagnosed with APS (double antibodies) and was about to be given treatment. Unfortunately I had to move to south east shortly after and a London hospital refused to treat until after stroke, heart attack, DVT because they had just been sued by a patient who suffered from poor treatment. I asked for another referral and had the unpleasant experience of meeting an uninformed consultant who said that nothing was wrong and so been left with no treatment. I now treat myself as best as I can with aspirin and otc things. It’s surprising that an nhs funded operation at a private hospital was refused recently in part because of APS and NHS continuing to refuse it’s presence let alone provide treatment. I’m considering going to a private informed consultant to get treatment in case APS is contributing to my seizures. If you are confirmed APS ensure you educate yourself at least as well as PA. Be aware of risks and educate your family about it (CAPs) and the systemic nature of APS and so various symptoms.
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