Do you have a friend or know someone with Antiphospholipid Syndrome (APS
*Note: I am not a doctor. This article is based on my personal experiences as a patient, and research from medical journals and resources that are reliable as far as I know. Nothing should be substituted for medical advice. Everyone is different, so please consult your own doctor before changing or adding new treatment protocols.
I’ve been putting this post on hold for quite awhile now as it can be a pretty dry subject. But a bloated forearm motivated me to get started, and a recent hospital
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What is Antiphospholipid Syndrome?
There are a few different types of blood clotting disorders. One of which is antiphospholipid syndrome (APS or APLS). Also known as Hughes’ Syndrome after the doctor who discovered it. (Fun fact: I’ve visited him in London!) How the blood clots or is inherited varies for each these disorders. But, in antiphospholipid s
Try This for Your Lupus! Hold on a Minute…
I have other chronic illnesses such as Lupus, Sjögren’s syndrome and epilepsy. There are quite a number of alternative and complementary therapies out there for these disorders. A lot of them are well established, or have good reviews from other patients. There are even renown TCM (traditional Chinese medicine) practitioners for Lupus in Asia who come highly recommended, yet I’ve never visited them.
It gets a little
It’s Not Just Alternative but Regular Foods, Too
Putting medicine and herbs aside. Even regular fruits and vegetables can mess things up, and the effects take hold pretty fast as well. For example, if I ate three pieces of broccoli for dinner, my blood would become thicker. By the following morning, sometimes even dropping to the INR baseline (a measurement for how fast your blood takes to clot, which is 1.0 for the average person). This is fine if I keep my intake regular (three pieces of broccoli every week, no more, no less!). As my doctor adjusts the meds according to my usual diet. But that means no gorging on a big bowl of salad, or gulping down a random cup of kale juice. Because hey, isn’t that supposed to be healthy?!
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Foods are Powerful (and Dangerous!)
Foods also trigger or suppress inflammatory responses within our bodies. For example, turmeric is great for combating inflammation caused by Lupus and Sjögren’s, but it’s also a blood thinner. Hence, people with antiphospholipid syndrome can’t just go buy a bottle of turmeric tablets and start popping them. Even if it might be beneficial for their other conditions. If it’s something that they would like to try, then they need to discuss this with their doctor. And monitor their blood tests for a period of time. It’s not impossible, but there are many additional steps to take for every little change.
Don’t Forget About Blood Thinning, Too
Oh and it isn’t just blood clotting that you need to be aware of, as I learned the hard way. I once ate a plate of quinoa, only to wake up with a giant bruise covering my entire arm. I discovered that it wasn’t the seed itself, but the hull which contains blood thinning agents called saponins.
You can identify most foods that contain vitamin K as they are either green in colour, leafy vegetables, or on a known list.
When You Add Alternative Treatments into the Mix as Well
As someone with
If I add Lupus back into my bag of illnesses, it means that I also need to avoid trying stuff like light therapy, infrared saunas and more. Lupus patients tend to be photosensitive and these treatments could trigger a
The Silent Killer
Part of why chronic illnesses are complex is because no two diagnoses are equal; people with the same disorder can manifest symptoms on extreme ends of the same spectrum.
For me, antiphospholipid syndrome doesn’t typically cause the biggest issues on a regular day. It’s the Lupus and Sjögren’s that batters my body with muscle aches, joint pains, swelling and other problems that I can feel. But when antiphospholipid syndrome hits, it goes for the kill. It’s like the quiet,
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The most recent major event caused by my antiphospholipid syndrome and warfarin was an ovarian cyst rupture. While this can happen to other women during ovulation as well, mine wouldn’t stop bleeding because I was on blood thinners, and soon there was a 9cm (3.54″) mass of clots inside me. I had waited for two days before heading to the A&E, as pain is a guessing game when you live with so many chronic illnesses. You never quite know the source of the problem, and I had assumed it was just period cramps or swelling from Sjögren’s. In fact, to me the pain from the cyst rupture was bearable compared to a bad flare day.
People do get surgeries done to remove such massive clots, but because I was on warfarin and have antiphospholipid syndrome, no surgery is ever straightforward. So they put me in the high dependancy ward, gave me painkillers, blood transfusions, then we just hung around to ‘see how it goes’.
In fact, this was a major issue amongst surgeons when I needed to get my mitral valve repaired a few years ago. None of them
Antiphospholipid syndrome is also a big problem for women who want to get pregnant. ‘Surprises’ should be avoided, as warfarin can be harmful to foetuses. They need to go on Clexane (Lovenox) injections, or a different
It isn’t good as a long-term solution however, even if I don’t mind injecting myself twice a day. It’s possible to develop a resistance to it, and it can also weaken your bones. That isn’t a good thing when I’m already at osteoporosis levels, due to the steroids I take to control my Lupus and Sjögren’s.
The most dangerous period during pregnancy with APS is during the later stages, as this is when blood clots tend to form, cutting off supply to the placenta. Losing a baby at any stage is heartbreaking, and to have it die just before birth can be highly traumatic. I’ve heard of too many heartbreaking stories where people only discover this fact after recurrent miscarriages (trigger warning: graphical images). I suppose that diagnosing such disorders isn’t exactly straightforward, yet such losses are preventable to a large extent (up to 80% successful birth rates for people with APS).
Just like you, people with APS love to travel and go on holidays, but there are extra precautions we must take. For one, our diets tend to change overseas. We not only lose access to our regular groceries, but some of us also want to sample as much of the local cuisine as possible! But who knows what ingredients are really in these recipes? The amount of food you eat and the change in meal times can also have an overall impact on how thin or thick your blood becomes.
For another, a DVT or blood clot is a medical emergency that requires immediate attention. The biggest concern is that these clots break up, and lodge in places they shouldn’t be in, which can even result in death. Finding a hospital overseas can be tricky for anyone, especially if you don’t speak their language, or are in a rural area.
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The Different Types of Blood Thinners Out There
There are a few different types of blood thinners used for various conditions. The way aspirin works differs from warfarin, which differs yet again from Rivaroxaban (Xarelto) or Clexane. A person with a metallic heart valve might take a different type of blood thinner, as opposed to someone with APS or Factor V Leiden.
Warfarin is a major player when it comes to interaction with other medications. This is annoying as it causes problems with many antibiotics, painkillers and potential medications I can use. I use the phone app by
Xarelto is a type of blood thinner which you can ‘take and forget’. You don’t have to monitor your INR, and you’re free to eat whatever you like. The biggest downside is that there’s no antidote for it. This means that you can’t stop massive bleeding and will need to wait it out – if that’s even an option. The good thing is that its half-life isn’t as long as that of warfarin. So why don’t I use Xarelto instead, you ask? For people with APS, especially those who have had blood clots before, Xarelto’s blood thinning effects aren’t strong enough. There’s more control with warfarin in that regard.
Common Sense Becomes Uncommon
Home ‘remedies’ such as massaging a bruise in order to help with blood circulation and to promote healing, is a no-no when it comes to APS. Doing so increases the chances of blood clots spreading to other parts of the body. I’m always super worried whenever I get a bump on my head. While I live with microhaemorrhages in my brain, a massive clot would be disastrous.
Epileptics don’t always have to go to the ER after every seizure, but those with APS are advised to do so anyway. This is to ensure that I’m not bleeding in my head or somewhere else, as I wouldn’t have known what had happened. Even the way I nourish myself for recovery can become a puzzle to solve.
Is This a Blood Clot, or What?
When I experienced the worst pain of my entire life due to a massive outbreak of blood clots, the general practitioner whom I had first seen brushed it off as muscle cramps. If even a doctor can get it wrong, what am I to do? But I like to think that I’ve become quite an expert in regards to my own body, with the many painful lessons that I’ve had to go through over the years. It’s like hands-on medical training on steroids (and yes I take steroids, so I actually know what that’s like )!
So I rushed to the hospital the next time I had chest pains. And the next, and the next. I mean, if I didn’t learn from the most painful experience of my life, then that would be stupid, right?! But as it turns out, most of the time it’s due to muscular pains, a mix of my other autoimmune conditions, or regular ailments. It’s tough to tell the differences when you can’t see through your skin. While I’ve learned some tricks to differentiate them over the years, they’re not always accurate either.
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My Other Autoimmune Disorders Can Also be a Nightmare…
I once missed a flight because I couldn’t imagine bearing with the pain for eight hours in a pressurised cabin. It was probably the Sjögren’s that was squeezing pain out of my entire
There are a few levels of pain in every chronic illness patient’s personal chart. My 9/10 would be equivalent to screaming in pain throughout the night, and rocking my body into frenzied oblivion. This isn’t an exaggeration.
…But APS Takes the Last Slice of Cake
I save my 10/10 pain for massive blood clotting episodes, like the one I had experienced before.
Genetic Factors and the Accuracy of Blood Test Results
There are also differences between people of Caucasian and Asian descent when it comes to APS, and how it interacts with or affects their blood. Another example is that Indian patients tend to need higher dosages of warfarin, as their body metabolises it faster.
I decided to invest in my very own INR testing kit, and it’s been a lifesaver in terms of putting my mind at ease, especially while on the move. Although, it did take many wasted strips to figure out the maximum difference against my venous blood tests.
Finding Your Own Rhythm
Recognising the tell-tale signs is like a detective game. It takes practice and learning from the many mistakes that you’re bound to make. But you will understand your body better over time as you grow together with it.
I had so many questions when it first happened as a gawky teenage girl. Like ‘can I pluck my eyebrows, will it cause clots’? My doctor, being an older male, suggested that I avoid this as it would irritate the blood vessels. Small stuff like that. Things that probably wouldn’t even cross your mind at all.
As with many things in life, you will just need to find your own rhythm, with lots of patience, time, adaptation, and compassionate attention. Who knows what the future will hold for each and every one of us, but all we can do is to learn, and live as well as possible. I wish you all the best, and if you have any questions or knowledge to share about APS, feel free to leave a comment below!
APS can also be
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