Confused after visit to the doctors today.

Hi again everyone, im very confused and very very upset after speaking to my GP today.

I had more blood taking from me on the 5th of April as my consultant wanted to do the sencond test for Lupus Anticoagulant, he said if that test came back and I tested for it I was coming off the Fragmin injections and going onto Rivaroxaban and If i didnt have it I just stay on the aspirin

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So i recieved a letter from him saying id be going onto the Rivaroxaban and from then ive been taking them for almost 3 weeks now.

I had a x ray did last week and had to go to my GP for the results today. So whilst sitting there discussing the x ray results he asked why I was on Rivaroxaban and aspirin I said this is what ive been prescribed......he then got on the phone and spoke to my consultant, came off the phone and said I didnt have L.A infact my bloods clotting and its so rare and no one knows why!! im utterly devistated and dont know what to do or think. After the discussion I had with my consultant in April and my going onto Rivaroxaban once the tests came back threw etc etc. The GP said today thats why Im taking Rivarozaban, folic acid and aspirin as its not been identified why i had the clot and predisposed to having more. If anyone could advise me on anything id so appreciate it.

Kelly

[MaryF Administrator]

I am not surprised to hear that this has caused confusion and upset, you must go to your next appointment with this consultant with either a trusted friend or relative, it sounds as if the GP does not know enough about your situation. Is your next appointment with the consultant soon, as you need more detail and explanation regarding this, if the appointmen is not soon, please push to get a cancellation. Let us know if you need any medical papers or to answer any specific questions to help further. Sorry you are having a rough time. Mary F x

[Hidden in reply to MaryF]

Hiya and thank you for your reply, my heads all over the place now and its pulled the rug out from under my feet.

I dont have another appointment until August, and i feel like id rather speak to someone sooner rather than later as im a bit frightened now as to whats really going on in my body.

Kelly.

[MaryF Administrator in reply to Hidden]

Try ringing the actual secretary of the consultant to explain that you need to urgently take a cancellation slot. That is a long way off to be left with that, Best of luck, and a fresh start tomorrow. Mary F x

[Hidden]

I wil and l thank you for your advice its much appreciated.x

[ebulfin]

The LA test is one of the tests used to give doctors an indication that we have APS, but it has to be used in conjunction with the symptoms the patient has presented to the consultant. I would assume the consultant tried to explain APS to your doctor who only heard the "not fully understood" and the "rare" parts and then stopped listening.

You really need to speak to the consultant (his secretary or assistant is a good first point of call) to get the disease fully explained to your GP as it could cause a major problem (as it does with many) when the GP is not fully aware of the consequences and complications they can be responsible for with ill informed interference in our overall treatments.

It could be that your consultant could give you a telephone consultation to just put your mind at ease, but it looks like his prescribing Rivaroxaban, he has come to the conclusion that you have APS or another Auto-immune problem and would like to see how you progress while on Rivaroxaban over the next 12 to 16 weeks (which is why the appointment is in August).

I hope you get some sense from the hospital and that your GP can be educated on the disease that is far from rare and definitely not VERY rare as he described it to you.

Best wishes, Eddie

[Hidden in reply to ebulfin]

Hi Eddie and thanks ever so much for your advice, i will take it all on board and hopefully get my questions answered and my mind put at rest.

Kelly.