Might be diagnosed with Antiphospholipid Syndrome (APS)

[Summer133]

Hi

I previously in January 2023 was diagnosed with PE, the past year has been difficult and long and knowing I was on blood thinners adoxaban forever as the heamotogist advised originally in January 23 was killing me, as I have heard that blood thinners are rat poison and can get internal bleeding.

I was plodding along just about picked myself up, my left side arm pit the left rib and same area up my back to my shoulder blades really hurt and still do, I cant stand up for 2 long as its gets painful and i get a stabbing sensation in my back. I have to lie down to rest my left side then it gets better. Not sure if anyone else has experienced this? I've been the drs he said it may be part of the healing process for PE even though its been over a yr.

I then was called to the heamotogist on my birthday in January 2024 where he said I dont need blood thinners and my risk is low. He gave me the option staying on them just incase but I may get internal bleeding,I said no as he even told me the risk is low. He then gave me a few blood test and said come bk after 1 month for results.

My results came bk last week in March 24, and i was ok for everything else apart from one sticky blood for APS Hughes syndrome..im terrified now!!!

The heamotogist stated if he tests me again then he will put me on warfrin or rizoxaban, he also stated you will have a high risk of internal bleeding with these..knowing my luck I may get it! This time it will be for life.

The heamotogist stated its best if I think about having another test.. he has called me in in May 24..if I decide to have and its positive the im on blood thinners for life but he also said if I dont have it then the risk for blood clots is low but not zero.

I'm so confused..I know I was trying to have children but that's gone out of the window and will remain as a wish and only a wish

I feel asif my life is going down hill since January 2023..I had a PE in January 2023, then was diagnosed with MGUS and now APS..crazy times..pls help I need advice 😢

Thankyou

[Star13]

First of all I’m sorry you have had such a difficult time and secondly, your heamatologist hasn’t done a very good job in explaining things to you has he?

APS is diagnosed after you have had two blood tests 12 weeks apart. As you have had a PE and have been put on an anticoagulant this is normal practice for people that have a PE. However the type of anticoagulant you have been put on is not recommended for people with APS. Given that you only have a couple of months till the second test it’s probably not worth changing it now. However if the second test is positive, then you should go on to warfarin or Heparin injections because they are the only things that are considered safe at the moment for APS treatment. ALL DOACs of which Apixiban is one and Rivaroxaban is another, are not recommended.

You are correct warfarin is a rat poison but it has been used as a blood thinner for many many years with millions of users. And as there is no medication that has a zero risk of bleeds you really don’t have any choice. Your INR will be monitored so that it stays in the right zone. Having APS means that your blood is sticky so you have risks for it to clot. The risk for that is much higher than the risk for bleeding with warfarin and I don’t think your Dr has done you any favours by scaring you.

As for getting pregnant, APS is not a barrier for having a baby although you will have to be monitored carefully. It sounds like your going to be anyway with the MGUS so they will keep a close eye on you.

Try not to worry, many of us live with this disease and taking blood thinners. Things will settle down for you too. I hope things work out for you.

[Summer133 in reply to Star13]

Hi Star13,

Thankyou so much for replying..im just abit scared and upset..I was fine before my 40s I used to hate taking medication and paracetamol but now its changing.. im currently on no medication but let's see what the results will be he has stated I will be on them for life..is there anyway of preventing APS..I can I do anything to reduce the risk of clotting instead of taking medication..ie garlic,ginger,cayenne pepper..

Im just feeling so down these days.

Thank you

Sadia

[Star13 in reply to Summer133]

Unfortunately there is no known cause for APS at the moment but there are lots of very clever Drs researching for cures. One such group in the USA do a email newsletter every month which you may want to join.

umichumhs.qualtrics.com/jfe...

They recently did a very interesting small study on Ginger!

Try not to be too depressed. We all feel very anxious when first diagnosed, that’s very normal, however over time we learn to live with the disease and the medication and find that we adapt very well. Many people will leave very normal lives, they may be slightly different to what they once imagined but we all cope.

I’m sure others will come on and give you reassurance soon too. I’d say just get on and live your life but be respectful to the disease. Also be as knowledgable as you can too.

[Summer133]

Thankyou so much for the lovely advice. I will have to get used to adapting to change and be respectful to the disease.

Lifes very unpredictable..from nothing to 3 different types of diseases within a space of a year..suppose they may have been in my body for a while but I can be thankful knowing I have lived a good 40years of my life.. suppose problems in life make you stronger and knowing that I'm not the only one on this forum has also given me some support and peace of mind.

I will take everyday as it comes ..let's se what life has inplace for me

Thankyou again, hope you have a lovely day

[Lovetocycle76 in reply to Summer133]

Hi Summer.

Your case is very similar to mine in that we both suffered a pulmonary embolism in January 2023 and have since been told we have antiphosphalipid syndrome. I'm a 47 year old male by the way.

I'm very sorry to hear your story. It's a frightening and eye opening experience and I guess that's why we all end up here, eager to learn more about this condition that has manifested within our bodies. I find these groups a great help and it's great to speak to others going through a similar experience. If you want to speak or ask any questions feel free. I'm hoping we can bounce ideas off each other and share tips on what helps improve our symptoms etc. I'm currently jabbing myself with the blood thinner tinzaparin as I had another episode this January and thought it was another clot in my leg which subsequently moved. The doctors have kept me on the jabs for now and I'm waiting to see the consultant and talk through a long term treatment plan.

Like you, I still get lots of pain in the lung areas, the back, shoulder blades and legs but I don't know how much of it is from scar tissue and how much is being caused by APS. It's all really frustrating and I hear you and feel your pain. It always seems to be one step forward and two steps back. Recovering from a pulmonary embolism seems to be a very hard mental process too. It's so painful and exhausting and you have very few good days and mostly bad days I've found. Nevertheless, we have to keep pushing forward and finding ways to persevere. Keep talking and sharing your experiences. I'm here any time you want to talk. Take care.

Glenn

[Summer133 in reply to Lovetocycle76]

Hi Glenn,

I'm sorry to hear that you had another episode of blood clot, I'm glad you caught it in time.

I have had pain in my right thigh a few weeks ago but the Dr said it was just me over reacting.. its a shame we can't have a special system to check our d_dimer test.

I am currently off medication but I feel aside I'm just lingering around waiting for a nother blood clot case.. just feel anxious about thinking what if it does happen will I find out in time. The whole thing is scary.

I'm glad I found this forum I fo feel there isn't much out there about blood clots and APS and other issues.

Hopefully you can update me on how your feeling the pain..I. just struggling..the drs won't do anything..I'm just praying..I have a 7yr old ..just want to be here for him.. he so small. Let's see what life holds for me.

After reading your reply I do feel better as we can relate to each other.

Sadia

[Lovetocycle76 in reply to Summer133]

Hi Sadia,

This must be horrendous having such a young child. I'm glad that my daughter is 14 now but it will be exhausting at the best of times having a young child let alone when you have a whole load of health issues to contend with.

I have to say, the after care after having had a pulmonary embolism seems to be shocking. I'm on another Facebook group for pulmonary embolism and DVT and everyone seems to just be abandoned to get on with it and learn about the condition themselves. They don't tell you how bad or how long the recovery can be and people often have complications and pains long after the clot has cleared up unfortunately. They seem to just go with the generic but everyone is different. It's a tough struggle because doctors still seem so ignorant. They always say it's in your head when people complain of symptoms. My consultant tried to tell some of my pains were due to anxiety and it's such a load of old nonsense. Unfortunately you have to keep pushing them and not back down before you get anywhere. Do you think the pains are clot related or do you think it's the APS causing your pains because APS can apparently mimic a clot in some ways and cause issues like referred pain apparently. It's hard to know what's going on and that's what makes it a difficult thing to diagnose and treat I guess. The ginger thing is something to look into. I've found turmeric capsules with black pepper help, as does drinking Welch's grape juice which promotes a healthy immune and vascular system. Have you found anything that helps? I don't think a diet of gluten helps to be honest. Anyway, take care and keep in touch

Best wishes.

Glenn.

[Summer133 in reply to Lovetocycle76]

Hi Glen,

I'm currently trying garlic,ginger and cayenne pepper.

Been honest everyone you ask your dr they say they can't say if garlic ginger and cayenne pepper is ok. I know they are natural blood thinners and with my 2litres of water everyday.. I'm hoping I'm ok.

Its hard there not much for ppl like us..this forum does definitely help.

Hope you get better soon.

[Lovetocycle76 in reply to Summer133]

Thanks Sadia. You too. Take care.

[GinaD]

Those of us with APS have sticky blood. Our blood is more likely to clot and stick. You should know that many medical students and many emergency room doctors have seen patients on warfarin who are and have been bleeding out. The results can be catastrophic, however. If you feel that warfarin is dangerous for you to take, you should remember that there is a difference between normal blood and sticky blood. People who are taking warfarin for reasons OTHER than APS can indeed have catastrophic bleeding incidences. Taking other drugs, such as those new drugs like eloquis, etc are indeed safer for the general public. But those of us with a APS have sticky blood that tends to clot in normal circumstances.When us APS patients take warfarin, the drug is actually causing our blood to the behave normally. I repeat. warfarin causes our sticky blood to behave as if it were not sticky. Normal is good! And warfarin has been prescribed for decades now. The side effects are well known: because warfarin inhibits the uptake of VitaminK warfarin can cause in the long term increased risk of osteoporosis. Which is why doctors who have experience treating APS will suggest that one learn which foods have vitamin K and then eat similar amounts of K foods on a weekly basis. I have been on warfarin for 23 years now! I no longer have migraines, head aches, clots in my legs or brain mini strokes caused by clots in my brain. Warfarin has become my best friend! Taking it has saved my life!

[MJTroubadour in reply to GinaD]

What a wonderful and concise answer! Continued good health to you... and all of us!

[Summer133 in reply to GinaD]

Thankyou GinaD,

Everything you have stated does make sense..but for some unknown reason the thought of going back on blood thinners scare me..I just hope everyone is showered woth good health and happiness 😊

[GinaD in reply to Summer133]

I think all of us humans are a tad worried about starting a new life long medication. We know that side effects do happen. But again, in my case, warfarin has become my best friend. I am now 69 and my doc agrees that I should aim for the lower end of my INR. 30+ years on warfarin and I have never, ever had a major bleed -- until my most recent hip replacement when my doc sent me home too soon and restarted my warfarin too soon. ( Hopefully, After 2hips and 1knee replacement, I am done with such surgeries!) .

[GinaD]

Coincidence? Or, as I like to say, a God-incidence? today on my occasional online info from Cleveland Clinic is an article on the dos and donts of eating while taking blood thinner. Find the article at health.cleveland clinic.org.

[katiekate87]

Hi Summer,

I wanted to reach out also as someone who has been diagnosed very young in life with antiphospholioid syndrome (I had a stroke at 25 years old) I am now 36 and have been on warfarin this whole time. I have an INR range of 3-4 and have my own coaguchek machine to check my levels which makes it much more convenient rather going back and forth to the GP surgery.

I wanted to also note warfarin is the only blood thinner that can be managed in an emergency with any bleed, as you can have instant vitamin k to thicken it straight back up to normal (it taste absolutely rank I might add), and taking any warfarin takes 3 days for any affects to change within your system. (This has happened once to me when my inr was 8 - which is deemed dangerous because of the risk of internal bleeding). However, even at this high I still did not bleed. Drs generally tell you this as a precaution to know what ‘could happen’ but again it hasn't to me.

The official diagnosis is very scary and I was a young mum at the time of my stroke with my girls were 3&7. There is no history of this disease in my family and it randomly appeared in my late pregnancy I had a stillborn at 22 weeks and a full stroke after labour.

I actually got to meet founder of antipholipid/Hughes syndrome Prof Hughes before he retired in London, to discuss my case. He said I could still have more children should I wish to. However, I would need to be monitored very closely and have heparin injections daily and additional midwifery appointments throughout. I would also need to be induced early as he doubted I would carry to full term.

I chose to not have anymore children as I wanted to concentrate on healing and looking after my two girls who are 18&15 this year 🙊

The side effects of warfarin are super scary! I've watched everything I've eaten.. Too much vitamin K.. Cranberries..However, in the nearly 11 years on the medication I have not had a single problem with it medically (apart from thinning hair and bruising at times) and one in being 8…

From my recovery with my stroke I can now walk, talk and looking at me you wouldn't actually know I'd had a stroke! But I have learnt a lot about myself from it.

I do have some residual long term effects (numb fingers, numb face, nerve pain and fatigue) However, I have my life back and I am 2 months off of finishing a degree in social work, as I want to help other people in their times of lost hope!

Fell free to message me, as I have been exactly where you are. It is scary! But you can live a normal, happy life on warfarin. Katie xx

[Summer133 in reply to katiekate87]

Hi Katie,

Wow you surely do inspire me, I'm so happy you have got your life in track and are with your children happy 😊.

I'm just a bit scared as the heamotologist has frightened me with the side effects but hey if its going to happen then it will.

I'm surprised he hasn't got back to me about an appointment..he did he will but nit years off him.

If I have to go on warfrin, then I will..I have heard a few stories in here and uts so nice that everyone and you are supportive.

I'm going to chase the heamotologist and see what he has to say.

Thankyou for taking your time in messaging me..it has really helped my situation.

Could you use the coaguchek machine to check if your blood is thin?

I wish you all the best with your degree, your right you have been through alit at such a young age and going forward your will succeed as you haven't given up

[KellyInTexas Administrator]

hi summer133,

As an admin, I welcome you here and apologise for the tardy response and reply.

I would say it’s important that you make sure your rheumatologist is familiar with APS.

If your symptoms persist, make sure to alert your physician.

It is possible to have children with APS with daily clexane and and aspirin, but only if carefully managed by rheumatologist, hematologist , and under the care of a specialist high risk obstetrician gynecologist who are specialists with APS. ( there are teams that will be recommended by specialists in the UK for this.)