Just diagnosed with APS: Hello all, I... - Hughes Syndrome -...

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Just diagnosed with APS

ellochka99
ellochka99

Hello all,

I was recently diagnosed with APS. I am 43 and live in Canada. I had a stroke and MRI actually showed multiple strokes. Feel very lucky that they didnt affect me much, other than some minor issues with my vision and headaches. The stroke made the doctors here look at my medical history, going back to my son born with an IUGR, 3 miscarriages and migraines with aura. Back in 2013-14 I was undergoing an investigation into my miscarriages and an elevated ANA was discoved. The tests for lupus came back negative. Not sure if the other two were sent for. This time around, after my stroke, the labs came back with elevated ANA again calling for more testing. Two of them for lupus and anticardilipin came back negative. Then they had to send off for beta 2 glycoprotein - which took forever- and it came back with IGM elevated value of 21. So they put a diagnoses of A PS and started me on warfarin. I am still dealing with the shock that they have not tested me for beta 2 glycoprotein when I was treated for miscarriages as I really wanted to have another baby. I feel so cheated and disappointed.

My questions are:

1. Anyone out in Canada having similar issues? Are you getting anywhere with your doctor? Can you recommend a knowledgeable rheumatologist?

2. What would be the best way to learn more about primary APS? I read a lot on the web and in this forum but still need more information as to what type of medications are out there and their possibilities along with side effect etc.

Thank you all!

20 Replies
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Hi and welcome to our friendly site for HS/APS!

You have come to the right Forum as the members here know a lot of this illness. I live in Stockholm/Sweden and got the illness when I was around 45 so I did not have any miscarriages. Still today I have all the three antibodies incl Beta2glycoprotein1 in high titres and I am on Warfarin and selftest.

The most important factor is that you get a Specialist of Autoimmun illnesses who knows HS/APS well and who can give you the right drugs for it. You have already got Warfarin. What INR are you put on? We usually need an INR between 3.5 - 4.0 to feel ok.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got HS/APS herself and writes about the different symptoms we have and explained how it is to live with this illness. Good also for relatives to understand us. She had also like me problem with her vison and headaches and writes about it in her book.

The latest oral drugs are not in it as it is some years old but the symptoms are still the same and many members have liked the book here and read it and even her second book.

If you like you can put a special question on here and ask if someone knows of a Specialist-Doctor in Canada where you live perhaps. We have a couple of members from Canada.

I hope you stay with us here as I know you will learn a lot and get answers to many of your questions.

Best wishes from Kerstin in Stockholm

ellochka99
ellochka99 in reply to Lure2

Thank you Kerstin! I will get the book and yes thank you for the offer to ask about specialists in Canada. I am in Halifax Nova Scotia. I'm seeing a rheumatologist later on today. Not sure how many patients she treated with APS, but it is a start. Not sure what INR they would like to see. Last test i had was done on Monday and it showed a 2.0 INR and I was told to retest on Tuesday and continue with the current dose of warfarin and to discontinue aspirin. I hope to get some info after my visit today. Thank you very much for the information!

Lure2
Lure2 in reply to ellochka99

I meant that you could ask a new question on our site about a Specialist in Canada and more people will see it and be able to answer. We have very nice and helpful members here and knowledgable also.

It takes some weeks to get the INR up as 2.0 is too low INR.

Please let us hear how it goes with this Rheumatologist. GOOD LUCK!

Kerstin

Wittycjt
Wittycjt in reply to ellochka99

So how was the Dr visit? Did they refer you to an APS specialist?

ellochka99
ellochka99 in reply to Wittycjt

Well, I felt the visit with the rheumatologist was good. I have not done the 2nd test for a b2glycoproteins yet ( will do 8n a week), but becuase of my clinical manifestations and 1st test being positive, even though not by a lot, he felt that i needed to be put on warfarin. He also suggested i look into hydroxichloroquine as i could fall under lupus category even though the other two blood tests were negative (acl and lupus anticoagulant). However, I don't think there is an APS specialist in this part of Canada. I will post for a recommendation. I have a couple of other questions to post as well, as you know from our previous conversation. Thank you so much!

Wittycjt
Wittycjt in reply to ellochka99

Good I'm glad your still here, I thought you gave up on us and left, honestly this is the best site I have found so far. Everyone truly does care. Just keep in mind no one is medically trained who is responding they are answering you based on their experiences.

If you have any questions about navigating around the site please post them, as it helps everyone to learn.

You can also ask the administrators: APsnotFab knows a lot about fragmin/lmwh , MaryF knows a lot about other things such as thyroid issues, bloodwork, etc , Lure2 knows a lot about warfarin and warfarin diet. They will be very good at responding.

Welcome, heres 🥂🍻to better health.

There is also another administrator HollyHeski she is new and has a lot of history and a man Manofmendip he knows about warfarin and lovenox. As you click on different posts you will get to know who knows what and can figure out who will be able to help you. Please don't misunderstand ,as other members also have opinions and have a lot to contribute the best way is to post your question and check back for responses and you respond back and so the conversation goes.

Welcome, Cindy in NJ.

Please don't forget to update your bio and tell us about yourself. You click on your name , then profile... follow the prompts. Good evening, enjoy your new enlightenments

HollyHeski
HollyHeskiAdministrator

Hi and welcome, Im sorry you have had a really troublesome journey, unfortunatly its a recurrant story for loads of us. The good news is that you now have a diagnoses. Im sure others from Canada will answer and put you in touch with a specialist...

Lure2's advise is spot on, worth following..

Stay with us as we all help each other.

ellochka99 how are things now?

Hi Cindy, I am doing ok, slowly getting used to it. My INR is still being kept b/w 2 and 3. I had a 3 mo post stroke visit with neurologist. He said he wants to keep it at that and showed me the latest recommendations that they use for managing APS - which is what it said. I had bloodwork done for b12, vitD etc and was found to be anemic. Taking iron supplements now. Goldman vision test also was fine. Vision was the reason i found out i had a stroke.

I have another appointment at the end of Sept with rheumatologist.

I hope you are doing well! Thanks for checking on me - so nice of you!!!!

Wittycjt
Wittycjt in reply to ellochka99

Are you still here?

Hi,

Have you now found a Rheumatologist who is a Specialist in our illness and has had several patients like us with HS/APS before?

Your INR betwwen 2.0 - 3.0) is too low when you have had a stroke. The Neurologists do not "get" what this illness is about - too thick blood. C.hange to another Doctor who knows. Put a question on our site if you have not yet got a good name for a Specialist who knows our illness very well.

Best wishes from Kerstin in Stockholm

Hi,

Also you need to retest several of your antibodies as perhaps I am not sure (from what you write here) that you are Primary APS.

Kerstin

ellochka99
ellochka99 in reply to Lure2

Thanks. I do not think there are any specialists in Halifax who are very familiar with APS, based on the responses i got from this website there was a person in Montreal and there are immunologists and other reumatologists. I have a rheumatologist here, and will have a visit with him at the end of September. My understanding is that it is not commonly recognized around here. It is nearly impossible to choose a specialty Dr in Canada because you have very little information about what their experiences are and you just get a referral from a GP or in my case the Dr. who treated me at the hospital. I did the second beta2gp1 test that was sent off to Toronto and have not gotten the results yet. I tested in the lower category on the 1st one -IGM =21. I tested negative on the other 2 - anticardiolipin and lupus anticoagulant. as well as negative for antithrombin, protein C and S normal, factor v normal c3 and c4 normal. Ana was positive with dsDNA =40.

I keep hearing that I need to find a doctor that knows the disease from and I would absolutely do so if there was someone in the Maritimes Canada. it is taking me some time to learn more about the disease, my own response and be ok with all of this.

I do think that perhaps a visit to the UK to see someone who is knowledgeable may be in order

Thanks!

Wittycjt
Wittycjt in reply to ellochka99

I just pm'd you

Lure2
Lure2 in reply to ellochka99

Yes, do that as a Specialist is the most important thing for us with this curious and rare illness that so few Doctors know about.

Also to get anticoagulated from that Doctor as soon as possible. Those two things; Specialist and anticoagulation.

Kerstin

Please update us to what is happening with you.. have you finally got a specialist? If not you may want to find a hematologist... I know this seems to work better for some of us in the States, it has for me. I hope all is well

How are you doing now?

Can I ask what a IUGR is ? Reason for my question is I am under investigation and my son was born with missing fingers and hirshsprungs which is where the colon doesn’t form and the only only explanation for him was interrupted blood blow during pregnancy.

Xx

KellyInTexas
KellyInTexasAdministrator

Intra uterine growth restriction. This might fit the profile for you, yes.

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