consultant doubting diagnosis of APS

[Vespa1]

After 3 strokes and a questionable 4th that we were told was a migraine episode but definitely affected cognition and even more reduced left side movements, a phone call comes to say we are not sure your hubby has APS as we cannot find the diagnosis letter. He has been on warfarin since 2009 following a 2nd stroke. A 3rd was when his INR was only 1.4 and he was thombilised thankfully and lived to tell the tale. Due to his INR being at therapeutic rate on the last stroke /migraine 5 years ago now a haematologist is questioning APS, Because my hubby they say has several different hospital numbers they can’t find the diagnosis from 2009. My fear is that they will take him off warfarin and he will have another stroke. Because surely if he needs to take warfarin to maintain a 2.5-3. 5 range then surely something is causing the clotting. Has anyone else had a similar experience or any advice on what to say to the consultant on Monday. Many thanks Kath

[Star13]

I would not worry about being taken off of anticoagulation after 3/4 strokes! Even if it was not APS that was causing them they would give him anticoagulation for life with that history.

My advice now would be to get a second opinion.

Have you not kept any of the test reports from 2009? Can you ask your Gp for his records? Somebody will have a copy so I’d try and remember which Consultant he was under then and try and contact them.

Try not to worry I’m sure things will work out.

[GinaD]

I too was diagnosed years ago,(2001,) and have negative APS blood results ever since! One young doc suggested that I no longer, or perhaps bpnever, had APS and should come off warfarin. My current doc strrongly believes I still have APS and points out that my history of a fib and mitral valve prolapse is enough reason to stay on warfarin.

[Vespa1 in reply to GinaD]

thank you, at last spoke with a consultant that has explained and answered my concerns. They have found the test results from 2008, but not all 3 tests done but consultant has said he is happy enough with the lgM aCL antibodies on 2 occasions being high to keep my husband on warfarin but going to try and reduce it due to risk of intacranial bleeding due to increasing age.

He also told us it is our right to get testing strip which had previously been refused by our doctor so we can keep a closer eye on INR. Thank you for your continued support.

[MajorKrimes]

find a group of Physicians that know APS and you trust. Apparently your present Docs are in your opinion not competent. And for “hubby’s” sake, start a file and ask for reports on each visit, opinions given, and then Retain them in a safe, cool place!!!!!

you should know YOU have to take charge of his, and your, health care. This begins by avoiding quacks and expressing your concerns.

Good luck.

[Vespa1 in reply to MajorKrimes]

I agree and I’m now much more diligent about filling reports in date order but typically that is the missing one. He was at the time able to attend appointments on his own as I was working so never attended that one appointment due to pressure of work and keeping a family afloat. It was more advice or had anyone else experienced this that I wondering.

[MaryF Administrator]

Stand firm and say you will consider getting a second opinion, it is important that your voices are heard, is the particular consultant actually fully up to date with Hughes Syndrome/APS? Also asking GP to help with the records and lost letter is a good idea, especially as you do actually know the name. Sometimes also looking at the hospital website for that particular relevant department showing a list of consultants might also trigger a memory, have done that myself a few times. MaryF

[Lure2]

Hi Vespa1,

I feel a bit afraid that he have a too low INR (2,5 - 3,5) and now reducing Warfarin even more because of high age. How old is your husband? I myself is 79 in June and have an INR of around 4.0. I know we must be careful with a too high INR but If I am lower than 3.5 I feel very bad and get among others neurological symptoms back. I live in Sweden and I am triple positive with very high titres since 20 years back. I self test very often at home to follow my INR. It is also very important to have a Specialist who understands this difficult illness and who works with people like your husband every day.

[uscglady]

O have APS but it's only been diagnosed by symptoms and clotting events. My blood tests don't show I have it but when doctors sees my history they agree. Any responsible doctor would never remove your husband's warfarin except to try something better. I kept stroking on warfarin so we flied Arixtra (recommended by the Hughes Foundation in your country). My last stroke was in 2003gwhen I switched to Arixtra!! Many prayers for you and your husband. Lori Aydelotte