Is this as good as it gets?

Hello all, thank you for allowing me to join your little group. I've been reading past posts and I'm wondering if you all can give me some insight.

Although I have had positive blood work for ACL since 2012, I was just diagnosed with APS following a TIA in April. Prior to that, I had only had non-diagnostic signs such as one miscarriage, Chronic migraines, ongoing neurological symptoms (visual symptoms, imbalance, vertigo), mitral valve prolapse, Dysautonomia, and livedo reticularis. I also have two additional clotting mutations, MTHFR and PAI-1. My meds prior to April were just 1500 mg of keppra for migraine prevention. I was breastfeeding so no aspirin. I took twice daily lovenox through two successful pregnancies in 2013 and 2015.

My event in April was ruled a TIA after no findings on CT, MRI/MRA, two EEGs (neuro was convinced of seizures), etc. my hematologist prescribed xarelto, I think because I also have celiac disease and I eat a lot of vitamin k rich foods in order to avoid gluten.

Since my TIA, I feel myself disintegrating. I have daily frightening episodes where I feel extremely foggy,dizzy, and confused. My memory is diminished and I regularly can't find the words to say what I'm trying to say. At times simple tasks require significant concentration. I have constant facial twitching that drives me crazy but no one else can see it. I have had multiple episodes that are intense (although not as bad as my TIA) and I feel weakness in my left arm and leg following them. The last big episode was a week ago. I went to my GP to follow up last Monday. She ordered another MRI which showed nothing but I still have weakness and I still have these smaller episodes daily. She was able to identify weakness in the leg with the physical neuro strength tests so there is that. In general though, I just feel horrible. Aching, exhausted, dizzy, nauseated. All the time. I can't take this.

I'm reading that most of you are on warfarin and know of an INR range that you feel best at. Does this mean you can reduce some of these symptoms this way? I have an appt with my hematologist Monday and I would like to discuss switching to warfarin if this works for some of you. I can't accept that this is now my new standard of living! I am 34 with two small children and I work full time in a clinical mental health setting. I need energy and full brain capacity.

At my visit last week my doctor thought I had a small stroke (so ordered MRI) but also wondered about MS, she said there are notes from the radiologist on the April MRI of "white spots" indicative of "hypomyleination." But when I asked what that meant she wasn't very clear. She said really the could just be spots from all of the many thousands of migraines through the years. I doubt I have MS, I'm thinking this is all APS and We don't have the right treatment figured out. I'm trying to decide what I should say to my hematologist on Monday.

Additionally, I know I'll be asked of I have an APS specialist. I live 600 miles from anyone on the apsaction list. If it comes to that, I'll work on getting up to see someone, but that will be very expensive and difficult if I can manage with the docs I have in my own area!

I would love any insight from you all that have such experience in this area! Thank you!!

26 Replies

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  • Wow! You have had a hard time. What dose of Xarelto are you on? I take 20mg (at night-as I found it suits me better) and 100mg of aspirin daily. If you have two small children and work full time, I'm amazed you're as good as you are!! I have a few white spots as well on a previous MRI but was told it was probably a reminder of past TIA's. I'm thinking maybe if the LMWH such as Lovenox didn't upset you too much maybe you could continue with a therapeutic dose rather than Xarelto-even though this works really well for me. Certainly put it to your haematologist when you see him/her. The down side of Warfarin is the constant monitoring and whether you can make time for this along with your busy life and love of vitK foods.

    Were all these symptoms present when you were pregnant and taking Lovenox? Or are they worsening since changing over?

    Hope that things can get sorted out soon and if you can spare the time and energy to see an APS specialist, it would probably benefit you. Even a Rheumy with understanding of it would help.

  • Thank you for reading that ridiculously long post!

    I'm currently taking 20 mg of xarelto at night as well. Glad to hear it is working for you!

    To answer you question about lovenox, it's hard to say. Both of my pregnancies were very difficult. Migraines were much better. I had high frequency vomiting that was very difficult to manage. dizziness was constant but could be more related to dysautonomia (I felt faint all the time...and did faint several times), did not seem neurological as my dizziness now does.

    I had one 5 month time interval where I took heparin (not lmwh, insurance wouldn't pay for it) while ttc my first. I felt pretty good then.

    I have a feeling that it will take an act of God to get my insurance to pay for lmwh for longer than 1 month. They approved it for pregnancy with a letter from my doc but I'm unsure about long term. It's runs about $1500 without insurance here.

    I'll definitely bring it up though!

  • There is light at the end of it

    I was having all your symptoms plus secondary heart attackss. I came home to die three years ago

    Now on warfarin and have my life back

    Ask to go on warfarin

    You'll know the difference within days

    Best of luck Diane

  • Warfarin doesn't suit everyone, some never manage to achieve a stable Inr no matter what. I'm one of the lucky ones as my Inr doesn't seem to be affected by what I eat and I do sometimes have a high vit k intake. I eat what I want when I want and my Inr stays stable, that seems impossible to many but it's true. I do eat a lot of fruit and veg all the time. You do have to keep your Inr quite high to get rid of the symptoms and many doctors don't like to give you an appropriate target range. There's no harm in trying it to see if it works for you, it might do but it's no magic bullet.

  • I'm sorry you are having such a hard time. I have lupus and there has been mention of ms as my mum had it but brain scan and lumbar puncture didn't show that. I have very poor balance and terrible fatigue. I find exercise very helpful at whatever level you can do it. Stay strong and as fit as you can, I also use brain training to combat mental fog.

    I hope that helps, I'm 45 so I know it's different as you are a lot younger. I hope things improve .

  • From what you have explained I have no doubt that your symptoms are because you are not adequately anticoagulated. If I were me I would go the Lmwh route such as Dalteparin. I would suggest that you put it to your Dr as a suggestion as a trial for say 6 weeks. I'm on 10,000iu which is what Prof Hughes tends to put people on. Then if that has improved symptoms you can decide how you want to move forward and if you can manage a life on warfarin with the constant testing. The newer oral anticoagulants for someone like you who I suspect would need a higher INR have not undergone trials yet for APS so it would be a difficult decision to use them so you may have a fight on your hands to stay on heparin.

    I would get something stronger than what you are on now however because you do not want to risk a stroke which by the way don't always show up on MRI straight away, mine took 48 hours and 2 days after mine before it did. Keep in touch and let us know how your doing.

  • The white spots that you referred to – was this from an MRI? An x-ray? An MRI run when I was having my symptoms back in 2000 before I went on warfarin showed dozens of white spots on my brain. Follow up MRI scans after I had been on warfarin for 18 months showed that all but one of the white spots had disappeared.

    The subjective symptoms you are describing resonate with many of us as symptoms of blood that is still too sticky. What I call 'brain fog' is a symptom that is very difficult to earn a doctors respect, which is especially frustrating since it is a symptom that radically impares quality of life.

    I also have celiac disease, but I have been able to stay stable on warfarin. it helps to know that green is the color to limit. Brocolli must be limited, but eat all the cauliflower you want. Green cabbage must be limited, but eat all the red cabbage you want. And iceberg lettuce has very little vitamin K

    I don't know where you live, and doctors in your part of the country may not have caught up with this – but now warfarin patients are not told to avoid all vitamin K, but to try to eat consistent amounts. I must also eat consistent amounts of blood thinning foods, such as ginger and alcohol. But I have remained very stable on warfarin -- so doing what one hematologist called blood chemistry voodoo has worked for me. so I give myself a salad a day plus another K greenie, or sometimes two salads a day + if I add a little ginger. And a glass of wine with dinner each night – and my INR stays in range.

    if you look at the graph online somewhere you will note that the clotting cascade is very very complex. Not all blood thinners have been clinically tested to show they are effective in treating sticky blood. and from your post, it sure sounds like your current medication is not addressing your sticky blood issue. here on the site, many of us respond only to very personalized medications. Doctors experienced in treating APLS know this and are willing to experiment until effective treatment is found. Experienced docs also listen to their patients

    I – as many others on the site – recommend reading Kate Thackery's book "Sticky Blood Explained."

    and one more point – I live in West Virginia but I drove to Cincinnati ( c 250 miles) for my diagnosis. I followed up with that hematologist twice a year for many years until my local community produced a hematologist who could treat APLS. in the meantime, I was able to have my warfarin managed locally. So the long-distance drives was limited to only twice a year.

  • So interesting to find someone else with celiac too!

  • Morning sorry if it has been said before haven't got much time to answers, I was seen by a neurologist who told me that these white spots were due to ageing I was only about ? 47 at the time

    I never had any migraines but I had developed epilepsy and given medication for it my local neurologist who was hopeless as prof Hughes says listen to the patient and he didn't !

    Dizziness for years treated with Betahistine works really well.also if I feel a spell coming on I pinch my nose and blow which if I do it soon enough it stops it in its tracks

    Memory fog improved greatly with Clexane then Warfarin still not brilliant but loads better when around 3.5 big k same amount approx daily warfarin should be ok

    If you are changed to warfarin a coagucheck machine is although expensive very reassuring

    If it were me I would take a list along to the haematologist with questions you want answered

    I am now on Hydroxychloroquine and it has Made a brilliant improvement to my balance

    Hope you manage to feel better soon, good luck

  • Hi,

    You have got some really good answers I think.

    In Sweden your anticoagulationdrug is not approved for us. I can tell you that Warfarin was my lifesaver. Yes, my symptoms are reduced or totally gone with the right number of INR (a rather high one that is). I have all the three antibodies they test for APS positive and in high titres.

    I think you should follow the advice of APsnotFab (Administrator). I have been on this site for many years and I know she knows a lot (none of us are medical trained) by own experience which we all look for as knowledge is power.

    I can tell you that even that I have all the antibodies positive they have never found a real clot or embolie on me. I have micro-clots and micro-embolies and they are not seen on a Scan of today, but do a lot of damage to our body. Well anticoagulated you are protected as all of us have too sticky blood that has to be thinned and so very few Doctors around the world know this illness except for some Specialists. Try to find one of those!

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin,

    Again, thank you for the replies, I agree--the more we know the better. Can you tell me about your micro-clots? If they are not seen on a scan, how do you and your doctors know they are there?

    Its not that I don't believe you, I very much do--I am wondering if I have them too. I'm also wondering if perhaps these spells are frequent small TIAs, that just aren't as bad as my first. I also have intense pains in certain areas of my body (there is a specific spot in my forearm) where I wonder if its sort of trap for micro-clots that then move on. Just wondering aloud I suppose.

    Thank you again!

  • The symptoms and Warfarin helping. I had doublevision, could not see on my lower half of the right eye for some minutes, could not walk straight, a lot of AURAS (still an Aura now and then but less), had to hold on a tree because everything was spinning to the left for some minutes etc etc.

    Anticoagulation with Warfarin (high level) has helped but I have Pulmonary Hypertension and leaking heartvalves, heartinsuffience, and damaged hearing etc etc. Have had very high bloodpressure before correct anticoagulation.

    Pulmonary Hypertension probably caused by small PEs.

    From "Autoimmun Rev. 2006 May 5"; .............

    "Pulmonary microthrombosis is among the most frequent arterial complications of APS". Timely diagnoses and correct therapy, as well as good patient-doctor collaboration, can result in stabilization of the patients´s condition." ..............

    The problem for us is the difficulty sometimes to be believed which many of us on this site have been through.

    That is why we need Specialists who know the symptoms and understand that it is not in our imagination at all.

    Kerstin

  • I cannot thank you all enough!! I felt that I've been sort of getting this response from GP and neuro that since I'm on an anticoagulant, symptoms should be resolving. It's sounds like they should, but the fact that they are not just means I'm not properly coagulated. I will discuss this with my hematologist Monday.

    You are all wonderful for your time and responses. It means so much! I have felt quite alone and misunderstood.

    To answer a previous question-- the white spots were on my April MRI. However, no doctor even mentioned them until my appt last Monday. I guess they didn't feel that they were significant.

  • I can tell you that my therapeutic INR is today set to 3.2 - 3.8 but I have had symptoms (ev embolies) when I have been down to 3.3. I feel best near an INR of 4.0.

    Good luck with your Hematologist on Monday!

    Kerstin

  • My husband has APS and was on xarelto for about a year. He almost died and had most of the same symptoms you describe. Going back to warfarin didn't solve all the problems but he was better. They only thing that really helps is Rituxan treatments. Usually used for cancer it kills the white blood cells that have the antibodies. He has to do it every 3-4 months.

  • Where do you live? Does he have a Specialist of APS? Did he first try Warfarin before Xarelto? Why did Warfarin not work?' Did he almost die from Warfarin or Xarelto and what symtoms did he have?

    A lot of questions I am afraid.

    Best wishes from Kerstiin in Stockhom

  • It is so scary! He was on warfarin for 5 years but hated the up and down and testing. He was really well managed at that point but only had lupus anticoagulant diagnosis at that point. We are in US. Talked dr into xarelto and within months started with severe joint pain, he would talk and make no sense. Couldn't remember from a few minutes ago. He would have TIAs or seizures?? Not sure what they were but he would go dizzy and not be able to see. His neck became inflamed and would spasm. Severe head aches. 5 trips to ER with worsening symptoms and they would just treat the one symptom when we knew it was more. Finally neurologist ran blood tests and his inflammation level was 3.8 out of 5. Went to hospital and had 5 days of steroids and was finally diagnosed with APS. Started rituxan last September. 2 treatments 2 weeks apart and felt great for 3 months. Symptoms started to come back and had treatment again felt great for 3 month and is headed back tomorrow for treatment. Scary as this is similar to chemo and not sure of the long term effects and damage it immune system. Sorry so long. I know how it feels to deal with this with no real answers from doctors. Be your own advocate!

  • Hi,

    I have also Lupus anticoagulant and the other antibodies in high titres. I am on Warfarin since 5 years and selftest since 4 years.

    With Lupus Anticoagulant it can be difficult to be on Warfarin even if that drug usually suit us very good if we can handle it on a steady and high level.

    I am spoiled here in Stockholm as i can selftest and monitor my own tablets and test at home every second day. We have the teststrips for free but have to pay for the machine.

    My therapeutic level is an INR of 3.2 - 3.8 but I feel best at almost 4.0.

    Is selftesting an option? It may cost perhaps but otherwise he could perhaps take LMW Heparin as some APS-sufferers feel ok on it. I am not medical trained so I can only speak from my own experience and what I have learnt on this fantastic site.

    The absolutely most important thing is to have a Specialist to talk to who know this rare illness and understand what he is going through.

    Lupus Anticoagulant is not the illness Lupus but one of the three antibodies they test for a diagnose of APS.

    He can be happy to have you to help him!

    Hope you stay on here

    Kerstin in Stockholm

  • I think you should put your own new question here. That way you should have better answers as we are writing on FuliesaidFutz question now.

    Perhaps someone could give you a good advice what to do.

    Kerstin

  • I just wanted to say that I'm taking Eliquis and Plavis together, just FYI. But since you are having such a bad time, I think the people are above are likely right about Warfarin or Heperin.

  • After my diagnosis of APS I was put on warfarin and it has helped me so much. My memory and concentration is markedly better, I rarely have a migraine, my sleep has improved somewhat and I no longer have nocturnal twitching and sudden, searing head pains as I am trying to drift off, to list just a few of the benefits. However my INR can be a bit of a bother - it'll be stable within a .3 range for a few weeks and then suddenly jump up or fall quite a bit. So I go for weekly tests at my GP practice. When my INR falls, I know about it - auras, migraine, tinnitis, sleep issues, dizziness, problems focussing my eyes, losing words, etc. I feel best with my INR around 3. Too high and I can get a few symptoms too.

    I do hope that you will very soon be put on a suitable, effective anticoagulant. Best wishes.

  • It's so helpful to hear from all of you, to know that others experience similar symptoms and are able to get some reduction with appropriate anti coagulation. Again, I appreciate all of you sharing your stories and experiences!! All the best and wishes for healthy days to all of you!! I'll update after I speak with my doctor!

  • As a final follow up, I had a very frustrating appointment. Apparently my last blood work in June showed no antibodies. None. I've consistently had ACL antibodies for years.

    Basically the hemotologist said with zero antibodies and on a "powerful anticoagulant" I should have no symptoms. After describing them, he said it had to be something else. APS is not causing my symptoms.

    I got a bit upset, and he suggested that perhaps I'm am dealing with anxiety about having another TIA.

    Anyway, he left me on xarelto. Added aspirin. Going to run some blood work but suggested I head back to neuro.

    The end. I'll be making another post soon asking for help finding a real specialist in the US!

    Thank you all again for helping me on this journey. I feel crazy but I'm sure it's just a bump in the road.

  • Where in the USA do you live! I'm from USA and maybe I or my sister, or any of us from USA can give you suggestions as to where to go! I was DX'D with APS in October 2015, not yet a year! My 1st blood clot was a Pulmanary Embolism at age 24! I continues to get DVTs for a few years and was on warrafin for 6 months after each episode! To ale a ing story short, I'm now 63 and was finally DX'D less than a year ago! I had been under the care of HEMOTOLOGIST for at least 13 years for another thick blood disorder caled Polycythemia Vera! My APS just slipped thru the cracks! I wish u well! U have great people on here with great knowledge to help you! My advice is that you see a Specialist in APS! A Rheumatologist or Hemotologist in USA is best! Many Neurolgists just don't get APS! You must find a doc that believe in you and knows you have a real blood disorder and understanding to ur needs! I think I've finally after today after speaking to my Hemotologist honestly and frank, that I'll be doing what I shud for APS because of my sister and the wonderful people on this forum! I made my sister whom is 4 years older than me, be tested for APS! I was frightened for her because it can b familiar and wanted her to know and be aware b4 anything bad happens! Well to our surprise she too tested positive for APS ALSO! My sis and I help each other and as I say the awesome knowledgeable people on here! Please let me know where u are from and I'd love to try to help you!!! Stay well and GODSPEED!!!

  • Thank you! I'm in the southeast. I will start a new post to let this one die and see if I get more hits!

  • Ok great thx ! Good luck

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