Crazy turn of events...: Hello everyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Crazy turn of events...

llande profile image

Hello everyone! I had multiple strokes in Feb/March 2017... After lots of labs and tests and in and out of the hospital due to cva's. After finding out about my PFO, and having them working on scheduling a surgery to close it, the blood tests came back and I was diagnosed with APS. So they believe the APS caused the PFO to throw the multiple clots that were causing the strokes... I was then put on Warfarin. I'm super sensative to the med... they send me sky rocketing one week and the next week plumeting... I made it to two weeks and then right back to one week consecutively to be checked... I have never been longer than two weeks between being checked. It has been a rough 7/8 months so far. I can feel the differences in the high and the low INR... and the difference in the shift from one to the other in a week... there has been so many things that has happened since February. Yes, February is when it all started but I went to one hospital and was sent home with dx of complex migraine... and treated me as though i was a drug seeker,needless to say they missed the cva. The next time I went to a different hospital. That is where all these things came to light. Tested and positive for Lupus as well, but no diagnosis of Lupus as of yet... It's just been a crazy roller coaster this year. That's some of my story anyhow.

26 Replies

Very interesting!! They admitted me thinking maybe I had a stroke but MRI and CAT were clear (unless they missed something). My GP at the time told me at my discharge follow-up that he had a patient with similar issues and they figured out she was throwing mini-clots. My body is now very sensitive to stress, fatigue, and the sun especially. One of my neuro’s said that is classic of someone that has had a stroke. Apparently you can feel almost completely healed but don’t sleep well for a few nights and all of the symptoms come back even though there was not another stroke. I’ve wondered more and more lately if somehow they missed a stroke.

So sorry you’re going through this! Although our issues are a bit different at this point I know how lmiseravle all of this is!

llande profile image
llande in reply to StickyStacy

When they told me about the multiple strokes they said in the left occipital lobe but come to find out yes two there and one in the right frontal lobe as well... yes the symptoms get worse when fatigued. Extremely sensitive to stress and fatigue for sure. Target INR is 2.5-3.5. Feel better at 3.0-3.5. It's been a rough year.

Wittycjt profile image
Wittycjt in reply to llande

Where are you located? Do you have a specialist?

Sorry you’ve had to experience this. If the warfarin is not successful try low molecular weight heparin perhaps. It is injected but gives peace of mind. Good luck. Continue to be active, as you will find it helps. Walking about at your own pace is a good plan, but it is up to you and your Dr, Cindy in Nj, USA

llande profile image
llande in reply to Wittycjt

Missouri, I see a vascular doctor, a cardiologist, and a pcp. No specialist for the APS. Need one. I go to a coumadin clinic here weekly. They do any adjusting and I'm up 2 points in a week or I'm down 2 points in a week. No adjusting and it still bounces a point or so but not as severe. I am an active person mostly, unless the fatigue gets to me.

Wittycjt profile image
Wittycjt in reply to llande

It’s when the fatigue sets in that is when you need to be active I find. It’s hard but it works. I have a stationary bike also, for when it rains. Best of luck. Onward and upward, Cindy in NJ

I've had 3 strokes that I was aware of and over 30 that showed up on Mri's, having your Inr tested more frequently is a good thing, twice weekly is good as it enables slight adjustments to be made to your Warfarin dose to avoid peaks and troughs. Most of us do best with an Inr above 3.5. Mine has to be above 4 as I had a noticeable stroke with an Inr of 4. The sooner you find an Aps specialist the better.

llande profile image
llande in reply to Tucson

I asked the coumadin clinic about self testing and they did not want to even hear of that. They said they would do the testing weekly if they had to... and they have had too.. but I don't believe it is enough with the sensitivity I have.

Wittycjt profile image
Wittycjt in reply to llande

Go with your gut, see if you can get your doctor to oblige you in a self testing machine and strips...”listen to the patient”. Your patient, “you” says something isn’t right.Just sayin!

HollyHeski profile image

Hi, sorry you are going through all this.

I see you are in America - where are you based?

It is really important that you see an APS/Hughes specialist and get the right information, medication and support.

Once we know where you are we can help you find this specialist.

In the meantime, keep a diary of what you are eating to see if there is anything that it making your INR flutuate. Watch the vitimin K -

Keep in touch.

llande profile image
llande in reply to HollyHeski

Missouri. I do watch the vitamin k. I stay on the same amount. Try not to fluctuate it. In need of a specialist for sure.


Welcome to our friendly site of HS/APS! Hope you stay with us as you will learn a lot from our knowledgable members from around the world.

As others have already said you need first of all to find a Specialist of autoimmun illnesses who has had patients with APS before and knows what questions to ask you and what tests to do (incl blood-tests) and then finally what treatment you need.

I also have Warfarin since 5 years and now selftest as that is the best way to be able to control your INR-levels as you can test your INR very often which we need to do to avoid more strokes.

As you have had a stroke you should have a higher INR than 3.0. We usually feel good at an INR of 4.0. We very seldom bleed from our illness, but clot a lot.

Also a Fragmin-shot to take when your INR is lower than 3.0.

If you are positive to the antibody Lupus Anticoagulant (one of the three they test before you start Warfarin to diagnose you) it can be more difficult to remain in target with your INR.

Talk with your Specialist about this. There are other options also.

Best wishes from Kerstin in Stockholm

llande profile image
llande in reply to Lure2

Yes they tested for the Lupus before starting the warfarin that test was positive. I have since had another and it was positive as well. They also tested for the APS twice within 6 months. I have the diagnosis of APS. I have a target INR of 2.5-3.5 but as I tell them at the Coumadin clinic I feel better in the higher end. I need to find a specialist for sure. is an online site on this side of the pond. They do not have a list of doctors experienced in treating us, but there is a forum which might clue you in to a useful doc near you. I can recommend a doctor in Northern Kentucky near Cincinnati but I know still a long way from Missouri. ( I had to travel there from WV for my diagnosis, but it was well worth it!) Dr. Winkelmann, hematologist.

KellyInTexas profile image

llande, I know this has really been a tough year. I’m in Texas, by the way-

* my heme does not like making adjustments with warfarin more than 1 mg at a time.

*big swings can ( I call I’ll yo- yo ing inr ) leaves your body feeling unwell

* with strokes I believe you would need to keep your INR at least 3.5 - if not 4.0 and unless there are other medical criteria with you that would prevent that- I don’t know about your heart repair- would question any thing lower .

* a supporting published trial to look at to evaluate this thinking for you and your doctors right now is the 2016 RAPS report. The admin here on this forum have included it under pinned posts. It talks about the Higher INR needs for strokes. ( obviously you are already on Coumadin/ Warfarin so this aspect of trial for you is a mute point.)

It sounds to me like for not having a ,” true specialist” your team is doing a pretty good job.

Until you can see a true specialist think of warfarin like this: ( i started on 7.5mg.. every couple of weeks had to go up... my INR would plummet. I’m now at16.5 and 17mg alternating every other day, then every third day. Finally figured it out after 7 months. It’s still not perfect, but better.

Here is analogy: Your body is like a big water tank. You have to fill it. It takes a lot to fill initially, but once at top, it takes very little water ( coumadin) to make it spill over , or reduction to make it dip below level mark just even with top.

My INR is set 3.8-4.2

Swings in INR make me feel off. It takes a week or two of a high enough and stable INR to see a difference. Those two factors must join.

llande profile image
llande in reply to KellyInTexas

I was only taking 2.5mg daily and a 5mg thrown in here and there I am now only take 3.75 daily. So 26.25mg in a 7 day week... they have been bouncing me from 1.8-4.3 back and forth for 8 months... I'm super sensative to the medication.If they take away 2.5mg in one 7 day week up to two weeks I will go from 4.3 to 1.8.. if they add 2.5mg in a 7 day week up to two weeks I will go from 1.8 to 4.3... so it takes very little to mess with my INR. They have set my INR at 2.5-3.5 and I feel better in the higher range. I don't like being 2.5... 3.0 or higher feels a lot better. But with the severe swings I feel off alot of the time... from memory deficits to headaches and everything in between.....

Wittycjt profile image
Wittycjt in reply to llande

I feel your pain. Would they be willing to put you on LMWH- low molecular weight heparin. Its injection and based on your weight. Keep us in the loop. Cindy n nj

llande profile image
llande in reply to Wittycjt

They had me on injections in the hospital and when i came home but that was only til my INR got up so the next dayafter I got out of the hospital when I went to the Coumadin clinic I was told to stop the injections because my INR was within range... they didn't have any trouble making me shoot up because if my sensitivity... but I would rather not be on injections of any sorts...

Wittycjt profile image
Wittycjt in reply to llande

So, How are you?

MaryF profile image

HI, it is very important that you have a Hughes Syndrome/APS Specialist, and one will be recommended I expect from others on here who also reside in the USA. Make sure they also test your Thyroid, plus your levels of vitamin D, B12 and Iron, so as nothing is making things more complicated. You may need to be prescribed an alternative medication. MaryF

llande profile image
llande in reply to MaryF

Thank you for the info. I take B12 daily and folic acid per the vascular doctor. My thyroid gets checked every two years when I go to my kidney doctor...

lupus-support1 profile image

I am sorry to read that you are having so much pain and distress.

When you write positive for Lupus, do you mean Lupus Anticoagulant, rather than, SLE - systemic lupus erythematosus - which does not have a specific blood test.

The Lupus Anticoagulant is a confusing title because it is a complicated clotting test used in APS/Hughes. I am only writing this to explain the term and is not a criticism.

I wish you a speedy recovery. It does sound as if you need and deserve to be seen by a specialist. Many doctors do not understand APS/Hughes or SLE.

With good wishes,


KellyInTexas profile image

I have a pretty good heme in San Antonio. Dr Joseph Holahan. He’s used to my numbers in this range and he’s comfortable with me. It’s a little too far from Dallas though... Texas is Texas though. You could get a good consult and a referral to a Dallas colleague.

He’s well versed in all aspects. ( not a “ true” specialist but he will get you a lot more stable than this.

Let me know if you’d like his info. I really think you should have a consult.

KellyInTexas profile image
KellyInTexasAdministrator in reply to KellyInTexas

Oh, sorry! You are not in Dallas! That’s sticky Stacy from earlier today. Gosh, sorry. Well, you are welcome in Texas, anyway! We are very friendly here!

No memory problems, thank you. My memory is just fine and dandy...

Oh my goodness. You have had more than your share this year. I'm am so very sorry all of this is happening. It's almost like 'will I ever feel better again'. I am hoping so and that it's soon. My very best to you for a brighter future. Blessings. Carole

Please do some research and read the many studies/results with using pharmaceutical grade DMSO. You tube it first so you'll see why. Try Yummy Mummy's first. She offers a wealth of information. Then dig in. It's very inexpensive as well.

Hi again,

You must have to find a Specialist of autoimmun illnesses who has had a patient like your before and knows the difficulties and sensitiveness with INR and as you probably have Lupus Anticoagulant positive also it can be very difficult to handle an INR without selftesting.

I selftest every second day (sometimes every day) as I have LA and I decide about my tablets and do not change much at all. I use the green vegetables to make the INR up or down that specail day.

I wish you Good Luck in finding a SPECIALIST somewhere.

Kerstin in Stockholm

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