New here...anyone from Ontario?

[Dandelocat22]

Hi there,

I have APS and moved to Ontario (near London) from Alberta 3 years ago. I have yet to find a doctor who has any specific knowledge of APS, and would like to.

I was diagnosed in 2013, after being hospitalized with multiple clots (the main one was all throughout the IVC, extending into renal veins, and new clots developed in my legs soon after). I was 43 at the time. Also dx with Autoimmune Hemolytic Anemia at the same time, which corrected itself after a course of Prednisone.

I am on Innohep (Tinzaparin) 22 units daily by injection....for "the remainder of my days", as one doctor eerily put it :).

Just wondering if anyone out there is from Ontario and has found someone good. My GP can't answer my questions, so she referred me to a hematologist - and she couldn't either.

I am starting to get worried that I am not staying on top of this condition as well as I should be....aside from the injection in the stomach.....every day.....for 7 years now.....fortunately I have some padding there, which really helps (thank you Cadbury cream eggs) :).

Thanks for reading!

[MaryF Administrator]

Hi there, first of all welcome, and I found this for you: uhn.ca/Arthritis/Clinics/AA..., I notice something going on there, so it may be worth making contact on behalf of yourself and your GP, as you do need somebody who fully understands this disease. I am also enclosing our charity website to look at. ghicworld.org/ghic-consulta... Please do feel free to use this forum as much as you like for information etc. MaryF

[Dandelocat22 in reply to MaryF]

WOW - this is incredibly helpful. Thank you so much!

[rach1081985]

Do you ivc filter due to your multiple clotting episode

[Dandelocat22 in reply to rach1081985]

I actually have an IVC stent - and that's the source of one of my burning questions! It was put in in 2013, and as recently as 2016 a CT scan showed that it is fully occluded (filled with clot). I would love to know if it still is....but have had so many CT scans am worried about getting another. I suspect it is still blocked, but collateral veins have taken over...my chest and abdomen look like a roadmap.

Anyway...my question is (throwing this out there in case anyone knows!): does a stent just stay in there forever? Or should I be having it removed? (especially if it is still occluded) So many questions....

[rach1081985 in reply to Dandelocat22]

I had similar after huge clotting be episode. Mine was full of clot and was told stay in life long but they can be removed..they have probably dispersed now but I don't know...hope u get some answers

[Dandelocat22 in reply to rach1081985]

Thanks, I hope you do too!

[Lure2]

Hi there,

The most important thing for us with this unusual autoimmun illness is to get a Specialist who works with people like us (with autoimmunn illnesses) every day. Usually a Rheumtatologist or a Hematologist that is. That can be a struggle really. It is a fight actually.

Also try to get as much information about your APS as you can. It must be possible to ask your Specialist about everything about your APS.

This site is very good and people are very nice and some also very knowledable. I live in Sweden and we come from different countries but with the same symptoms and worries.

Stay with us!

[Dandelocat22]

Thank you! I certainly will

[KellyInTexas Administrator]

Hello!

It’s usually not at all recommend for APS patients to have IVC filters.

Please make sure to double check my accuracy of this statement.

My understanding is that the filter tends to be some to cause more trouble for clotting.

This is one reason you must have an APS specialist to guide you.

It’s far better to thin the blood and avoid the need for a filter in the first place.

My mother had a filter... did not go well.

I’ve been told by my specialists of APS we are not suited to have them.

I’m sorry I do not know about specialists in your area- but Vancouver does have a specialist.

[Dandelocat22 in reply to KellyInTexas]

Thank you KellyInTexas....that actually makes a lot of sense, that IVC filters can cause more trouble than they solve. I will add this to my ever-growing list of questions for when I find the right doctor!!

[ELlieRL]

Hello, and welcome,I also live in Southern Ontario, but I live closer to Toronto. My APS specialists are my hematologist, and my rheumatologist. I meet with them annually, usually to discuss bloodwork. I like you will have to take blood thinners for the rest of my life, which, truly is a small price to pay to avoid unwanted blood clots. In my mind, my hematologist is the hero in my life. He diagnosed the cause of my stroke, which was the first blood clot I experienced, and it was a doozy. Although, I managed to fight my way out of the wheelchair after six months, my stroke affected arm and hand remain nonfunctional., and I limp about with a cane.I have been on Coumadin for five and a half years, since my stroke. In addition to meeting annually, with my hematologist, I also meet annually with my rheumatologist. In my own case so long as myINR(clotting factor of my blood)is in the correct range. Being on Coumadin I have to have it checked periodically Coumadin can fluctuate. I don’t mind getting my blood checked, right now , only once a month. I have not found That I need much in the way of other medical intervention, my rheumatologist has me taking hydroxychloroquine daily, to hopefully keep Lupus symptoms at bay. I don’t have active Lupus, but I do have the Lupus marker in my bloodwork. Which was the underlying cause of my APS. Someone in this group recommended a book about APS which I found to be an excellent read: Sticky Blood: Explained by Kay Thackeray. It was available on Amazon. It is written by a patient rather than a doctor, but it is easy to follow. I wish the GP I had at the time had been more aware of this autoimmune disorder, and I likely could have avoided my stroke.

[MJTroubadour in reply to ELlieRL]

Oh my! My story is so similar to yours. Eastern Ontario here. My stroke was very mild with no deficiencies, but terrifying nonetheless. No other symptoms before or after. Six months later I got an aps diagnosis. I have not been referred to a rheumatologist as yet and can't figure out why. I saw a hematologist once and now I'm monitored by the anti coagulation clinic at our hospital because I'm on warfarin...a whole other nightmare for me a stabilizing my INR seems impossible, at least that's how it feels. I see my GP on Thursday so I think I'll inquire about a referral. I feel like everyone with aps sees one but me. What a journey!

[Dandelocat22]

So sorry to hear of your stroke - but very glad to hear you fought your way out of that chair!! Ordering that book NOW

[KellyInTexas Administrator in reply to Dandelocat22]

I also recommend Hiways and Byways by Dr Hughes .