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The Annoying Thing About Antiphospholipid Syndrome (and Then Some)

The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

*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.

Do you have a friend or know someone with Antiphospholipid Syndrome (APS), or another blood clotting disorder? It can be a real pain, and interferes with treatments for many other chronic illnesses. I’m not discounting the severity of any other disease, but today I’d like to share with you on how having APS can complicate things further.

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 stay finished it up. I was worried about internal bleeding or blood clots in both instances, which is a common cycle of worry when you live with APS.

This article does an excellent job summarising the key points about APS in layman’s terms.

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 APS what it means is that my body produces certain antibodies which interfere with normal blood clotting functions.

The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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 tricky when it comes to APS and herbs, especially Chinese ones, because many of them have a blood thinning or thickening effect. I once visited a TCM practitioner and tried to explain my conditions. He gave me some herbs but when I Googled them, I realised that they’d all mess my blood up.

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?!

Foods are powerful (and dangerous!) | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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 APS 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. Blood thinning foods are trickier as you can’t always tell until something happens. Research helps, but data can be a little sketchy. There is more literature on vitamin K than blood thinning foods.

No contact sports allowed. | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

When You Add Alternative Treatments into the Mix as Well

As someone with APS I need to avoid contact sports, or any activity that increases the risk of bruising or bleeding. Some alternative therapies such as cupping or acupuncture work by causing mild injuries, so trying them is out of the question. (The same concept applies to tattoos as well, if you were wondering.)

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 flare up. If we combined them all, there isn’t much left for me to try in terms of alternative or complementary therapies.

Memory and cognitive issues. Mental health issues. | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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.

Whilst APS is a blood disorder, symptoms can appear anywhere in your body. The classic big bad stuff that it’s known for are strokes, heart attacks, pulmonary embolisms (clots in the lung), and brain haemorrhages. But it can also cause memory and cognition problems, headaches, edema, and even hearing loss, seizures, death, and mental health issues such as depression.

For me, APS 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 APS hits, it goes for the kill. It’s like the quiet, well controlled person who never gets angry, but when they do it’s scary and shocking.

Surgical Complications

The most recent major event caused by my APS 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 APS, 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 were keen to operate on me for the above reasons, and suggested that I hold it off for as long as I could. This was contrary to the advice of the top heart hospital in the U.S., and I had to go there to get it done in the end.

Pregnancy and miscarriage issues. | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

Pregnancy Problems

APS 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 blood thinning drug for the pregnancy and childbirth process. I actually prefer Clexane to warfarin, as it thins the blood through a different pathway, which means that I don’t have to worry about the foods I eat.

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).

Holiday Concerns

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.

Blood thinning medications. | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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 MedScape just to check for such interactions. I also need to carry a medical card stating that I’m on this drug wherever I go, in case I require first aid.

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.

Blood clot or what? | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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.

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 body, as if I were a dying tube of toothpaste.

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. | The Annoying Thing About Antiphospholipid Syndrome (and Then Some) | www.achronicvoice.com

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!

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Do you have a friend or know someone with antiphospholipid syndrome, or another blood clotting disorder? It can be a real pain, and interferes with treatments for many other chronic illnesses. Learn more about this autoimmune condition, my personal experiences, and how to cope with it here. Click to read or pin to save for later. | www.achronicvoice.com | #achronicvoice #antiphospholipid #antiphospholipidsyndrome #chronicillness #bloodclots #autoimmunedisorder #spoonies

Do you have a friend or know someone with antiphospholipid syndrome, or another blood clotting disorder? It can be a real pain, and interferes with treatments for many other chronic illnesses. Learn more about this autoimmune condition, my personal experiences, and how to cope with it here. Click to read or pin to save for later. | www.achronicvoice.com | #achronicvoice #antiphospholipid #antiphospholipidsyndrome #chronicillness #bloodclots #autoimmunedisorder #spoonies

    More Resources & Insights:

  1. 5 Natural Blood Thinners (article on healthline.com): http://bit.ly/2KPIxXN
  2. Low Molecular Weight Heparin (LMWH) (article on stoptheclot.org): http://bit.ly/2jJVOVr
  3. How Do New Blood Thinners Compare to Warfarin? (article on webmd.com): https://wb.md/2I7hlBY
  4. Antiphospholipid Antibodies (article on labtestsonline.org): http://bit.ly/2GSeGeb
  5. Blood Clotting Disorders (Hypercoagulable States) (article on clevelandclinic.org): https://cle.clinic/2savKY8
  6. How safe is herbal medicine? (article on straitstimes.com): http://bit.ly/2GRiiNf
  7. Excessive Blood Clotting (article on ncbi.nlm.nih.gov): http://bit.ly/2LAmLYf
    Sources:

  1. Aguiar, C. L., & Erkan, D. (2013). Catastrophic antiphospholipid syndrome: how to diagnose a rare but highly fatal disease. Therapeutic Advances in Musculoskeletal Disease, 5(6), 305–314. http://doi.org/10.1177/1759720X13502919
  2. Chua, Y. T., Ang, X. L., Zhong, X. M., & Khoo, K. S. (2015). Interaction between warfarin and Chinese herbal medicines. Singapore Medical Journal, 56(1), 11–18. http://doi.org/10.11622/smedj.2015004
  3. Vinatier D, Dufour P, Cosson M, Houpeau JL. Antiphospholipid syndrome and recurrent miscarriages. Eur J Obstet Gynecol Reprod Biol. 2001 May;96(1):37-50. Review. PubMed PMID: 11311759.
  4. Donohoe S, Quenby S, Mackie I, Panal G, Farquharson R, Malia R, Kingdom J, Machin S. Fluctuations in levels of antiphospholipid antibodies and increased coagulation activation markers in normal and heparin-treated antiphospholipid syndrome pregnancies. Lupus. 2002;11(1):11-20. PubMed PMID: 11898913.
  5. Manzano-Gamero V, Pardo-Cabello AJ, Vargas-Hitos JA, Zamora-Pasadas M, Navarrete-Navarrete N, Sabio JM, Jáimez-Gámiz L, Ríos-Fernandez R, Ortego-Centeno N, Ayala-Gutierrez MM, de Ramón E, Colodro-Ruíz A, Micó-Giner L, Castillo-Palma MJ, Robles-Marhuenda Á, Luna-Del Castillo JD, Jiménez-Alonso J; Spanish Autoimmune Diseases Study Group (GEAS). Effect of ethnicity on clinical presentation and risk of antiphospholipid syndrome in Roma and Caucasian patients with systemic lupus erythematosus: a multicenter cross-sectional study. Int J Rheum Dis. 2017 Jun 7. doi: 10.1111/1756-185X.13117. [Epub ahead of print] PubMed PMID: 28593703.
  6. Mok, C. C., Chan, P. T., Ho, L. Y., Yu, K. L., & To, C. H. (2013). Prevalence of the Antiphospholipid Syndrome and Its Effect on Survival in 679 Chinese Patients With Systemic Lupus Erythematosus: A Cohort Study. Medicine, 92(4), 217–222. http://doi.org/10.1097/MD.0b013e31829cae47
  7. Many, A., & Koren, G. (2005). Low-molecular-weight heparins during pregnancy. Canadian Family Physician, 51(2), 199–201.
  8. Di Prima, F. A. F., Valenti, O., Hyseni, E., Giorgio, E., Faraci, M., Renda, E., … Monte, S. (2011). Antiphospholipid Syndrome during pregnancy: the state of the art. Journal of Prenatal Medicine, 5(2), 41–53.
  9. Crowl A, Schullo-Feulner A, Moon JY. Warfarin monitoring in antiphospholipid syndrome and lupus anticoagulant. Ann Pharmacother. 2014 Nov;48(11):1479-83. doi: 10.1177/1060028014546361. Epub 2014 Aug 7. Review. PubMed PMID: 25104566.
  10. Sanna G, D’Cruz D, Cuadrado MJ. Cerebral manifestations in the antiphospholipid (Hughes) syndrome. Rheum Dis Clin North Am. 2006 Aug;32(3):465-90. Review. PubMed PMID: 16880079.
  11. National Heart, Lung, and Blood Institute, NIH (US). June 11, 2014. Excessive Blood Clotting. PMHID: PMH0062998.
  12. Lee, S. , Ng, S. , Oldenburg, J. , Chong, P. , Rost, S. , Guo, J. , Yap, H. , Rankin, S. C., Khor, H. , Yeo, T. , Ng, K. , Soong, R. and Goh, B. (2006), Interethnic variability of warfarin maintenance requirement is explained by VKORC1 genotype in an Asian population. Clinical Pharmacology & Therapeutics, 79: 197-205. doi:10.1016/j.clpt.2005.11.006
  13. Mok, C. C., Chan, P. T., Ho, L. Y., Yu, K. L., & To, C. H. (2013). Prevalence of the Antiphospholipid Syndrome and Its Effect on Survival in 679 Chinese Patients With Systemic Lupus Erythematosus: A Cohort Study. Medicine, 92(4), 217–222. http://doi.org/10.1097/MD.0b013e31829cae47

11 comments

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  • My sister has APS I’ve tried to help as much as I can although I don’t feel her pain. She had her first stroke at 21 3 more by 25. This article was 100% helpful! Thank you!

    • Hi Gabrielle, I’m so sorry to hear that she had so many strokes due to APS 🙁 Those are really the ‘big guns’ when APS does hit, and I’m sorry she had to deal with them. She’s fortunate to have such a caring sister like you. Thank you for reading and feel free to let me know anytime you have questions about APS. Wishing you and your family all the best!

  • This is crazy, I’ve never even heard of this before! It sounds like an absolute nightmare to live with and I really admire your strength dealing with all these conditions at once!

    • Thanks for reading and trying to understand, Layla, I appreciate it! It’s not so bad really, only when it strikes 😉 I admire you just the same! xx

  • Oh my goodness, Sheryl, I had no idea how complex APS was to live with, as well as dealing with your other chronic illnesses too. I’m sorry you have to cope with all of this. To constantly be having to think, and weigh up everything you do, must be totally exhausting. I really do admire your positive attitude and all you manage to achieve, despite everything you have to deal with. Great post for raising awareness. xx

    • Hi Emma, how lovely of you to take some time to read through this large text! Yes it’s less advocated for, I think, because it’s lesser known than Lupus, and also because Lupus does give me more pain on an everyday life basis! I hope this article was easy to understand for someone without APS! Sending hugs xx

  • Wow – this is so complicated! I can see the huge amount of work you’ve put into pulling this all apart to understand it. It must be such a headache considering every aspect of the introduction of something new to the mix. Lowen x @ http://livingpositivelywithdisability.com

    • Hi Lowen, thank you so much for taking the time to read and trying to understand APS, even though you don’t have it! I appreciate it 🙂 Yes it’s very complex, but a silent complexity until it strikes! I hope you’re having a great day! x

  • What an excellent depiction of a day in the life with APS! So many people dismiss me as “dramatic” or “attention seeking” when we both know APS can bring a very tough cookie to their knees- not to mention being dismissed by doctors for anxiety and then the federal government taking away our pain and anxiety medications because of others whom have abused you. Please keep writing. Following.

    • Hi Misty,

      Thank you for reading and following 🙂 Yes APS can really get you all anxious because we can’t confirm a clot or bleed until further tests at the dreaded A&E at the hospital. And the pain can be excruciating! I hope that you don’t have to go through any more episodes!

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