As many of you know I have been diagnosed with Sjogrens Syndrome, Lupus, Fibromyalgia in addition to APS.
I was on Warfarin from 2015 - 2020 (following a clot on my brain) My target was 4 and below that I was unable to function. Migraines, every muscle hurt, could hardly walk etc. in 2020 my INR became very unstable (it never was great no matter what I did).
I had INR that would swing as ridiculously high as 20. After 2 hospital stays to bring it down it was finally decided that I would try Clexane but quickly extreme bruising put a stop to that.
I was then put on Apixaban. Not the best for APS I know, but needs must. It seemed to work well but without regular INR checks I felt concerned at first but soon acclimatised and got on with life. There were good and bad days but I was ok.
Then we had an insurmountable amount of stress.
Eg. We lost our house and possessions to fire. (2:2:22) We rented somewhere that really wasn’t suitable for my needs 16 months later we moved back in (June) builders are still working on it off and on it’s not done yet
The day we moved back, my husband had a stroke and was hospitalised
My dear Aunt passed away
We took on a 15 year old ex care girl many years ago as a support family and tried to help her became her family time passed and she had a daughter 5 weeks after my son had his they were both my granddaughters in my eyes and the girls (now 5) were so close He ex partner (the father) is now in prison awaiting trial for attempting to murder ‘my girl’. Sadly her daughter has been taken into care now and I’ve seen her 3 times all year
My dad has dementia and … well I’m sure u know how hard that is mums just about coping and I can’t help her. I’ve a lot of guilt over that.
That’s just a few things there’s a long list . My GP has diagnosed me with severe depression (but due to my heart there are no anti-depressants that would be safe for me). I should probably go for counselling but there’s so much to get off my chest and you only get 5 one-hour sessions - the first and last are mainly form filling so I think it’s best not to start opening up if it just takes the lid off and then has to leave it How can they possibly help me in three hours?
My health has deteriorated so much. I barely go out now when I do I really suffer for it I went for lunch at a restaurant with a friend for her birthday Sunday was out 3 hours spent 2 days in agony able to do nothing
Last night my husband took me for a little drive, we ended up at MacD it made a change - we were out one hour I was in agony and awake until 3.30am after taking Morphine finally at 2.30am
I feel like my life is over am I to spend my days as a head in a bed? Do I keep going or give up and stay in minimising pain?
Last night I wondered if the worsening of symptoms is the anticoagulant I’m on? Is it stress? Is it just APS? Or what? I’m lost and no one seems to be able to tell me
I have no idea which symptoms are related to which condition (you may remember I have long QT a rare genetic heart condition and many meds could cause a heart attack/cardiac arrest)
So I have: Migraines. Pains in head (I think are micro clots). Random Stabbing (like needles) pains mainly in my legs but can be anywhere it lasts 10-20 seconds then it’s gone but comes somewhere else it could be in 5 minutes or an hour . Pains in legs- dull continuous aching night and day. Pain in all muscles mainly all 4 limbs. Stiffness. Stiffness in fingers. Sore tongue. Feeling as if the little bones in my feet have fused together (which they haven’t). Pain in knees and hips. Feelings as if I have a UTI but nothing shows up. Overwhelming fatigue - absolute exhaustion.
I know you are not medics but I’m looking for direction, support, hope, advice… (not much hey?)
I saw my rheumatologist in May (my next appointment should have been September but as yet I don’t have one) and my Haematologist last December (appointment to see in mid January) my GP is amazing but restricted in what she can do.
I’m newly diagnosed as Type 2 diabetic (through steroid use) and have meds for that for the autoimmune diseases I take Steroids 10mg, Mepacrine, Apixaban, asprin, Azathioprine and DF118 (Dihydrocodine), when needed paracetamol/morphine. I can’t have HCQ or Gabba or Amatryptalines. I also take beta blockers for heart condition and Candesartan for migraines emeprozole for reflux, fish oils (from Prof D’Cruz),
I’m very complicated and no one seems to help.
What are your APS symptoms other than clots/TIA/Stroke. I mean what is your life like. Do you know if your blood is ‘sticky’?
Any advice? What can I do? Is this it - time to withdraw from life? I don’t want to give up. I keep fighting and have even been teaching on a Friday evening. Just one class a week but I know it’s good for me!
Inside I’m only 25. (I’m just 57)) my body feels as though it’s 100. I’ve a lot of fun in me. Places I want to go, people I want to see, things I want to do. I can’t do anything at the moment.
Could it be Apixaban not working efficiently? How would I know without a major event.
If you have read this far thank you so much. I don’t usually go on so much but as you can hear, I’m at the end of my tether, I’m not coping.
Thank you for being there 💋 x
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WendyWoo50
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I am so very sorry to read your story. If you have a good GP as you say, your GP should be on the phone to speak with Prof David D'Cruz, who is an excellent diagnostician.
When I was at Tommies - after Dr Graham Hughes "left" I eventually demanded to see him. The junior doctors are not good enough for complicated cases. For example, it was he who spotted I also had lymphoma, as well as SLE. My point is, you must to everything you can to get your GP to demand an emergency appointment with Prof. D'Cruz.
I also think it would be a good idea to talk to a therapist - not CBT. You need to talk. I understand the NHS offers very little. I don't know where you live but in London, at least, there are very low cost clinics. Let me know if you are interested. Trying to talk with family or friends, no matter how well meaning, isn't good enough because you can't really let go of all your feelings - you might not even now what they are - it's happened to me.
I hope you GP will be able to speak with Prof. D'Cruz because that's what you need and deserve.
Thank you Ros. I do need counselling. I live just past Dover so quite a way from London (when u are feeling so unwell).
It is for that reason I transferred from Prof D’Cruz to a local rheumatologist Dr DeLord. She’s very good and worked with the Prof so is happy to talk to him. One of the other reasons I’ve not been to see the Prof is because I’m terrified of them taking me off the anti coags.
Hello Wendy - First of all I’m so sorry that life is throwing things at you but DONT GIVE UP!
We all have days feeling like we want to but there are always people who are far worse off than us and you have reminded me of that today.
So just a few things that come to mind reading your post.
1. Have you had your thyroid tested? And by that I mean a proper full thyroid panel of FT4, FT3, TSH and both thyroid antibodies? It’s very possible that you have not unless you have seen an endocrinologist privately as the NHS will just do a TSH which tells you nothing. Autoimmune Thyroid disease often runs along side Sojgrens and APS and if not treated can make you feel rotten. There are many private testing companies who will do those tests for you and I can give you that info if you message me and they are not expensive.
2. Along with the above, have you had your Vit D, B12, Folate and Ferritin tested too? We bang on about this as often these are low in people with autoimmune conditions and apart from making you feel awful they can mean that medications don’t work as they should, especially thyroid meds. Again these can all be tested privately along with your thyroid or you can do them separately or even ask your GP if they are helpful. One word of advice, if you are taking Biotin in any form either on it’s own or in a multivitamin, stop it a week before any tests as it can muck up the results.
I think that’s all for now but please let me know how your doing.
Thank you so much, I did have all those tests done privately via the company Lure recommended it was before the pandemic though so maybe I should get them redone? All results were smack bang in the middle of the ok range except Vit D, which was a bit low (despite having not long been on holiday to Turkey and taking Ad-cal with Vit D twice daily.
My dad’s thyroid is low due to the autoimmune he has - Scleroderma. Steroids also caused him to have Type 2 Diabetes My brother has RA but copes really well on Methatrexate and Embrol Injections. What a family hey!!!
Hi Wendy, your post expresses everything you need to say to your GP and your consultants. Please get in touch with your GP, and get an urgent appointment with both your rheumatologist and heamatologist, time now to push for total reevaluation. I remember your awful tragic house fire and I'm sorry to hear about your husbands stroke, you really have coped so well. But yes this amount of stress despite you being so strong has also had a knock on effect to your body - you need to get some control again over your health and you are right you can't do it alone.
We all at times play a guessing game to which symptoms relate to which syndrome, I recognise some of yours being SS and APS related but as you say they overlap.
See if you can get these urgent appointments, get your bloods checked starting from scratch, follow up with Ros advice to get proper Councillor, not just a few hours!
Stay in there and continue to be strong. Sending you a big hug. x
I'm exhausted just reading about your problems! I also had unstable INR's on Warfarin and Xarelto worked OK until it didn't. I've been on Clexane for a few years now and I remember being in hospital and a nurse was shocked by my bruises on my tummy and asked what had happened to me-had I been assaulted? Nowadays I still get occasional bruises and get my antiXA checked every 3 months to stay in range and the bruising is no longer a problem it once was. (I think after 60 injections/month my skin has toughened up as well)
Sometimes I just get so sick of going to doctors-I just want to chuck all my tablets down the loo! I now have my medical Hx on my phone along with any questions I might have for my appointments and I feel quite lucky as most of the time I'm well (or as well as can be expected) Write yourself a potted history and make sure that none of your tablets are interfering with each other and get you GP to go through it with you. It doesn't hurt to make sure they're not cancelling each other out. I'm able to book a long appt with GP here if I need it and then I don't feel I'm holding anyone up. I hope you get some help soon and feel better.
I understand that you have days when you don’t want to take your pills. I too sometimes feel that I don’t want one more pill or potion inside me. But know I would have no life if I did that!
At my surgery you book a phone consult whatever, with the GP then she calls you and if she sees fit makes a face to face appointment. I’m wondering whether I should print my post and send it to her. Then speak to her? I don’t know?
I will arrange blood tests (what is the website for the private ones please?)
Medically, (and I am NOT doctor) between Lupus APS Fibro Heart Diabetes and a good dose of polypharmacy, I don't think anyone will be able to tell you with any certainty or confidence what is going on. I can suggest a couple of things on Apixaban though:
1. If it was working before I'm not sure why it would then stop working or why there might be some sort of adaptation/ compensation effect over time (whereas with warfarin I can think of at least one reason) - but it's a much newer drug so less is known about it.
2. it is possible to test Apixaban effect, or at least test if it is reaching expected effect in the blood, the test is anti-Fxa (or anti-Xa) assay, this is the info from hospital near me: leedsth.nhs.uk/a-z-of-servi... . I think this is a specialist test that you'll only get through hospital (haematology may be best shot), not via GP, but it might be worth doing given the number of other things you have going on and the polypharmacy, something might be interacting with it, badly.
3. Apixaban (as with all DOACs I think) has short half life (certainly compared to warfarin), I am speculating but I think its effect will vary over the course of each day. I'd be trying to track my symptoms during each day, (by time, yeah, a lot of work but...) see if there is any consistent variation by time of day and then look at apixaban dose time (I'd seek real medical advice before moving dose time, but that'd be the next test). That might be a good indication if it is Apixaban/APS, conversely if there isn't a consistent variation by time of day, it's an indication that problem may be elsewhere.
I'm going to put other non-Apixaban stuff in another reply to keep the length reasonable.
Thank u so much for taking the time to write all that. It’s much appreciated.
It is in fact a literal minefield. Even with my scientific background it swamps me.
I will try and track how my pain, fatigue and mood is over each 24 hours and gather some information for my appointment in January. Two months should be valuable.
I will also list when I take my meds. I am very good at taking my Apixaban every 12- hours but as you say I maybe having contra-indications between different drugs. I’m no pharmacist. So it’s beyond my comprehension.
I have read about splitting the dose of prednisolone and so take 5mg 12 hours apart. To be honest I’ve not noticed a difference. I wonder if anyone else has had experience of this helping? I know it should be done with consultant approval but as it’s near impossible to get that support I decided to go it alone.
I will definitely ask my haematologist to do the assay for efficacy of Apixaban thank you.
every symptom you have written about could just as likely be symptoms of depression rather than diabetes or APS. Treating my mental health, paying out of pocket, gave me my physical life back. Please try therapy before blaming APS. Depression is a more deadly disease than APS or lupus so please treat it seriously. Therapy has allowed me to be able to work full time, walk daily, sleep well and I no longer have daytime fatigue. Depression is proven to raise antibodies and thus cause inflammation of both the brain and also muscles, organs and joints. Addressing your depression could unlock you from the prison you are in!
I’m so pleased you found your ‘key’ and are doing so well now.
Thank you for that. I have suffered (mostly silently) on and off for many years with depression. Probably 30. When, after having my only child, my health took a massive nosedive.
I mostly mask my feelings and act ok. Not wanting to cause anyone else issues, I think if I get dressed, do my hair and slap on some makeup I can kid everyone I’m fine. Every day I cry when I’m alone.
I know though as things physically get worse, so does my mental health and I’m at the stage now where I can’t cope anymore.
After the fire we all just got on with it, made the best of it, gathered the things we needed. Fighting daily for the insurance claim, having to be behind the workmen all the time as they tried to cut corners and give us 2nd and 3rd best. We all coped but now I’m having odd moments where I am overcome with emotion and just want to cry/sob. It then disappears.
A few weeks ago, the man who abused me (when I was 14) also had a fire (a minor fire compared to mine). It is rare for there to be one let alone two fires in a small town isn’t it? When I heard about it I was elated and walked around for 2 days with a huge smile on my face telling friends how happy I was (I must stress that no one was hurt though). This was alien to me and against my beliefs! I feel ashamed of feeling that way. But can’t help feeling that it was a big coincidence.
Anyway I think, in fact I know, that my mental health is really affecting my physical health as does my mum. She has been my rock throughout my life and now (with dad’s health deteriorating) I feel I cannot lean on her or talk to her like I always have. We are very close but it’s had to change recently. Leaving me feeling more alone than ever.
My husband still isn’t well but is a workaholic and rarely home except to eat and sleep. I fear another stroke looming if he is not careful.
My son and his family have a flat joined to our house and we share a kitchen. We are all close but they run a smallholding and are only home to eat and sleep too. Following a horrific car crash 5 years ago, he has PTSD and so I can’t offload to him either.
I’m surrounded by people and love yet I’m lonely. Very lonely. I’ve lost so many friends because I couldn’t go out and do things like they could that my circle is small now and I listen rather than talk to them.
I do need help but where do I go? Who do I see - what type of therapist do I need?
I hated EMDR (eye movements) , CBT seemed irrelevant, I feel I need to talk, sick it all out of me but that won’t change anything so what’s the point? I can’t drive at the moment and mum can’t transport me like she used to. So I just tell myself to ‘put my big girl pants on and get on with it!’ But I know one day I will spontaneously combust.
you likely have chronic PTSD from all these traumas you have endured! I have used EMDR and even purchased my own tappers but it does open the flood gates revisiting the traumas and is not for everyone. I now see a therapist biweekly and utilize mindful based therapy with DBT to give me skills to help cope and regulate my emotional response to triggers. I thought I had depression but in actuality I was diagnosed with anxiety so starting with a professional mental health provider to give you an in-depth evaluation leading to a proper diagnosis might be the best way to start.
I am also a fan of mindfulness meditation videos when things are really difficult I use ones to help heal pain with great results. Progressive hypnosis has a lot of free videos online.
Being sad, anxious, tired and in pain is nothing to be ashamed of and hiding the pain is damaging. Please let your loved ones in they likely want to help but you sound like one that might not accept help willingly because you fear being a burden. As a care giver you know the joy it can give you to help a loved one. Let your loved ones feel that same joy by allowing them to help you deal with your past medical and emotional traumas.
Hi, I am so sorry you have so much on your plate, physically and emotionally. It is a good idea to have counselling if you can, and also find out if there are any local support groups for emotional support. I as in a dire state, (a different set of problems to you), but I did between appointments with consultants order some detailed blood tests which showed that my Thyroid low functioning, (I had very stiff arms and legs and a bad back and endless urine infections), it also showed that my Iron, was low, also my B12 and my D could do better, I then had supplements which My GP and consultant was happy with, and due to my constant itching and tummy aches I went gluten free, this made a huge difference to me. In view of your symptoms, you really really need an urgent appointment with your consultant. Perhaps another phone call to the clinic saying how very ill you feel. MaryF
Wendy, I am so sorry to hear what you have been going through I can sympathise as had a crap year so far as well and I feel like I self manage as nobody appreciates the pain. I would love there to be a Dr House somewhere to help those of us with multiple autoimmune and other complications. I’ve recently improved a little with anti inflammation tabs for psioratic arthritis. The issues you are suffering from sound horrendous and I appreciate how debilitating the diseases are with wasted days, wheelchairs, pain meds, I really wish I could offer a magic bullet for you. All I can suggest is try to see all of your specialists and ask them to talk to each other if they don’t all ready. I was very surprised that my rheumatologist knew Prof D’Cruz and has got me calling him David now and also my brain doc ! This has allowed her to talk easily to all and she has come up with a reasonable management plan for me that appears to be working better than it has in the past. Sorry that’s the only thing I can offer as living with pain and disability is horrendous . I really want to give you a big hug but guess that would hurt both of us a little too much. Take care xxx
Thank u so much for those words. I appreciate everyone’s thoughts. Yes a one stop shop would be brilliant. Where you could talk to them all and they to each other. Maybe they will one day!!!!
I do hope ur feeling better soon too. Take care. I’ll send u a gentle hug back x
Wendy I saw a clinical psychologist who knew APS last year amazing help and now getting five appointments with a clinical psychologist who specialises in medical problems causing mental problems. They are out there and if you push your GP you should be able to get an appointment sorted but make sure the psychologist specialises in the effects of poor physical health on mental health as this makes talking easier. I see mine via zoom to prevent travelling or meeting as I’m on too many immunosuppressants. Thus would allow you to talk without travel
Thinking of you with great admiration and feeling encouraged by Ros and others here that have experience/ in depth working knowledge of England’s cogs and wheels of how to guide you to more specific / targeted help.
The whole “chronically ill” gig can be very difficult when it’s such a confusing and poorly understood multi organ / systemically involved ongoing process that flares on top of it.
I wonder what the above paragraph would look like with some word substitutions?
Substitute the word “chronically ill” with “life.”
Substitute the word multi organ with multi generational, or multi cultural, or global , or inter familial…. ( in your particular case intra familial).
I only have one parting though for you. ( and I’m sorry to muddy the water in any way because it very well may not apply.)
I’ve become an advocate for having a genetic test run to rule out genetic connective tissue diseases. There is only one company my rheumatologist ( and hematologist) uses, and it’s international. The company is Invitae. The particular test is :
Invitae Connective Tissue Disorders Panel
At the time I had my test ordered ( by Dr Jill Schofield on April 18, 2022) it tested 92 genes. She ran it to check for Loeys- Dietz Syndrome, which was confirmed by this test that I do indeed have. I have type 5, but since this test in 2022, there has been a type 6 identified.
So let me tell you a very brief overview of Loeys - Dietz Syndrome. ( and why I was tested.)
1. Loeys - Diets was first described by Drs Loeys and Diets in 2005 who were working together at Johns Hopkins . Loeys is from Belgium and hes back there as a prof and dr Dietz is still at Hopkins)
I was tested because my mother (long standing history of DVT’s PE’s pre eclampsia, etc…)had a large aneurysm ( AAA- root, ascending aorta, arch, descending aorta, abdominal aorta down to iliac branch). 1994. It was replaced with a Dacron graft.
In recovery/ icu- she started clotting/ PE’s… she was brought back to surgery from recovery and a ivc was placed and enoxaparin started then bridged to warfarin. After 3 months warfarin stopped. She died of a heart attack a few months later after suffering small tia’s intermittently.
This was all done in Houston Texas at Herman Memorial-one of the top centers in the world for this specialised cardio thoracic surgery.
Retrospectively it’s now understood she had APS and Loeys-Dietz Syndrome 5, which is TGFB3. It’s a problem with collagen not signalling correctly . ( genetic connective tissue problems).
LDS ( Loeys Diets Syndrome) is known to dysregulate the immune system . Most commonly seen are lupus, celiac, and MS.
Dr Schofield tested me due to my history - it causes a hot of hernias, acts a lot like Ehlers Danlos ( which I had a diagnosis of- but if you have a confirmed genetic test result of LDS that will supercede the ehlers Danlos diagnosis , plus the history of my mothers diagnosis.
It is autosomal dominant, however 70% of cases an are de novum. But if a parent has - must be checked.
Brain, heart, can be at risk. Veins can easily break.
It’s an inflammatory condition.
Symptoms: ( but not all people have all symptoms- as type 1 and 2 are more severe and young children are far more severe)
mast cell , very often food and drug allergies. Translucent skin. Club feet. Cleft palate. Scoliosis. Dove chest. Mitral valve issues. Hernias, prolapsed organs,
what can be be done?
Early intervention and monitoring!
And the addition of Losartan or ibasartan in some patients . This is why I’m an advocate of this genetic test if you been clinically diagnosed and not genetically diagnosed with EDS. ( Ehlers Danlos Syndrome.) the Beighton score is not safe or comprehensive enough for us.
This is a very basic overview. If you have a family history, or have been clinically diagnosed with Ehlers Danlos but don’t think that all to the story, have a look at
Wendy, I read your entire message and can relate to a lot of your issues. I am your age and I too have APS, type 2 DIabetes , amoung other things. I just want to say I am praying for you and please don't give up. I too have the migraines and extremity pain you mention. For me it feels like deep bone pain. It is hard to know which aligment causes the various side effects you feel. You have received very sound advice, so I will not repeat, but know that reaching out to this forum has been a huge support for me and it will continue to be for you too. By the way Dr. D'cruz, whom I have never met, probably saved my life with his symposium on never biopsy'ing a patient's with APS. I had a tumor in my kidney which required a partial nephrectomy. I have outstanding medical care here in California where I live, and my surgeon inotially wanted to biopsy the kidney tumor. I refused that recommendation after hearing Dr. D'cruz talk about all of the dangers of biopsy for APS patients. Thankfully the surgery went well. They found a horrible form of cancer called Clear Cell Renal Cell Carcinoma, which has been removed via full removal of the 2 inch in diameter tumor. I will knownif I am cancer free in after 18 months post op. I took Locenox/Clexane after the surgery to reduce the chance of blood clots. I am 6 months post op and finally doing well. I hope you are able to see Dr. D'Cruz. I hope one day I can meet him and thank him.
Thank u for ur reply. I hope and pray u go from strength to strength and are cancer free.
Prof David D’C is a lovely man with a friendly manor. I remember when he received his professorship I congratulated him and he was so touched. He genuinely seemed pleased and seemed shocked that a patient took time (in the short appointment) to do that. I think he would appreciate a letter from you Let’s face it every job gets ‘gutty’ sometimes and recognition and appreciation is important. Address it to him at The Lupus Centre, St Thomas Hospital (Google the address) also you could try his private clinic at London Bridge Hospital. please let us know how you go!
Once I was having a bad time and needed advice. I phoned the centre and left him a message. Not expecting much but that night about 7pm he. Phoned me. Such an amazing man. X
You've given me reassurance that I will be glad that I've booked privately to see Dr Cruz in February. I've been so knocked from seeing mean doctors that I just want to give up looking. I just need someone kind and will just listen rather than the look like I'm wasting their time (even though you're paying)
HiWendy I just wanted to say I'm really sorry you're going through so much now. Wow it's just so much! You must be an incredibly strong person. I spend a lot of time at home due to my fatigue and I know spending so much time alone really is hard for my mental health. Going out doing things for me causes so much fatigue I end up having crazy involuntary movements (very embarrassing if out in public). I still try to go out, but not that much as I just don't have the energy.
I'm sorry to hear about your aunt I get the feeling you were very close.
It seems you have a good support network, this is not enough sometimes and if you can afford to have some counseling sessions private I would go for that. Some things you just don't want to discuss with friends or family.
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