Hello everyone, I never join chats, but have had APS since 1993 and have several recent issues and am trying to learn of the correlation. I had an MRi which did not show sign of stroke (though I had one when I as diagnosed in 1993) or TIA's. My doctor said he is sending me a script for bloodwork, though not sure yet what the tests are. I also have been experiencing slurred and delayed speech , cognitive issues, and movements (had been diagnosed with chorea) I am not sure if all of these stem back to APS - though I had been told they may and wonder if anyone has had this same experience. How the were diagnosed with these specific symptoms. Thank you
Slurred speech, unusual movements - Hughes Syndrome A...
Slurred speech, unusual movements
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APS1993
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lupus-support1Administrator
Welcome! I think you need to return to your doctor and emphasise your recent slurred speech etc I don't think you should wait until your GP orders blood tests but an urgent referral now to a specialist in APS or at least, a neurologist to assess these acute symptoms.
With good wishes,
Ros
Any recommendations in Philadelphia?
Rutgers in New Brunswick, NJ has a pro thrombotic unit. CAB building.
Dr Clair Philipps. MD
I actually went to anti coagulation clinic at Penn but don't think the are APS knowledgeable
This is in New Jersey, through Rutgers. How far are you from New Brunswick?
Not sure how,far. I'm in philly
It's not far. Maybe an hour. Its near Rahway- on that rail way line. It's the Trenton line that goes into NYC- New Jersey Transit stops in New Brunswick if you take the Train.
But your the opposite direction. ( we are always using Princeton NJ as midpoint. )
You are not far. Philly close to NJ.
It's supposed to really be good. I have a hematologist in Princeton. His name is Dr Thomas Blom. he is well versed with APS- and he sends patients to Rutgers to this clinic if they need to be hospitalized- but the have an outpatient clinic also.
When I get slurred speech and confusion, I know my INR is too low. I get INR checked by my meter and in this situation it is usually 2.3 or lower. Then I take lovenox injections till INR about 3.0.
Need to know INR immediately to know how to treat.
Nancy in West Virginia
My INR is on point - but thank you 
I know this might seem bizarre, but HOW you get to your proper therapeutic INR can, in some cases, make as much difference as the INR itself. Under Dr. Hughes' guidance, I had tried Lovenox, but found much reduced symptoms on a "cocktail" of Warfarin AND aspirin (81 mg)--warfarin alone was not as effective.
It is still "early days" in understanding our disease--a respected Heamatologist at Stanford Univ. told me that he thinks eventually we will come to understand that what we think of as APS may well turn out to be 3-4 very closely related, but differentiated diseases. Point is, keep an open mind; keep learning. No better tool than this site and Hughes Syndrome Foundation. Good luck.
We are in the middle of making this decision as well. May I ask, are you livening in CA? When did you go to Stanford? I also saw Prof. Hughes a few months ago, but sadly have continued to clot. Profess Hughes has my INR set st a min of 3.5.
My heme here switched to exclusive Lovenox after I continued to clot, with the result being reduced effectiveness, ( more migraines and more DVT's.)
I'm back to warfarin. I'd like to add an anti platelet of some kind.
Please share the thinking. Why asprin and not plavix ( clopidigril)?
Who made this decision? The Stanford physician? What specialization is he/ she? Heme? What specific assays are drawn and for which medications, and how often?
Thank you!
Hi Kelly and sorry for the rough patch you are going through. Not knowledgeable enough to answer all of your questions, but will do my best.
The consult with the Stanford Hematologist was after my diagnosis (made by my Rheumatologist and confirmed by Hughes). Just looking for more answers. His surmise re closely related diseases seemed thoughtful and would explain how so many of us with APS respond so differently to different treatment--but that's also explained by individualality .
Can't remember what tests were done (10 years ago), but one idea was to try a steroid, which, of course, has its own set of nightmare side effects and not long term. After running it by Hughes in a telephone consult, my wife and I decided to live with the devil we knew.
Bottom line: my firm belief is that at this point in time, there is no right answer, only the answer that's right for you. Unfortunately, this means patience, diligence and enormous effort on your part individually. If I personally had stayed on Lovenox I'd be in a worse place. Am I keeping watch on alternative treatments? Absolutely
PS. You asked about Plavix. My understanding is that you can't lower your INR beyond a certain point with it (but verify--memory difficulties still abound) and more importantly, has not been tested as effective with APS as of yet.
Pose your questions to the group as a whole: an absolute wealth of practical experience--far deeper than most MDs--and incredibly generous with their time.
Yes, a lot of us are asking this question right now. Professor Hannah Cohen ( heme in London) just last month spoke at a conf hosted by Prof Hughes and advocates plavix. She likes to pull an Xa factor separately from warfarin assay to see how effective is independent of one another. ( something you might want to do.)
Thank you, and I very much agree with your Stanford heme. There is more here than meets the eye. My titers are not very high. Mid 20's. Nothing to write home about. But holy cow, can this chic clot.
Oh, and to clarify, I only meant plavix in conjunction with warfarin, instead of aspirin in conjunction with warfarin. Often in the U.K., it's plavix with warfarin that preferred over aspirin as the anti platelet of choice. I was wondering why the Stanford heme suggested aspirin- as some patients report aspirin as a " miracle drug " but I'm not sure if they have trialed plavix also, and have chosen to return to asprin, having had better results. I thought this might have been the case for you- I have some neurological involvement also- TIA, seizures, etc. just wasn't sure.
Sorry you having more clotting! My specialist says you have to find the right drug "cocktail" to help relieve the symptoms, and that cocktail will vary person to person.
So I've gone from warfarin + aspirin + Vit K + Vit E (from previous doc), to Eliquis + aspirin. She'd prefer the plavix instead of aspirin, but when I trial it, my headaches get a lot worse. So I'm back to aspirin.
Next I will try adding the plaquenil, the last time I tried it my headaches got bad, so I'll try a different generic. I really hope I can take it, since so many people find it helpful.
So I think the 'why plavix vs why aspirin' question is about - which of them helps the symptoms.
Also, just for info, the switch from warfarin to eliquis was to see if it would help the horrible migraines (it did).
Good luck and I hope you get some answers soon.
Hi Tofino 5,
I wonder if you have left the Warfarin too fast?
You say you have a Specialist (hope she is!), I think I heard you say that you wished you did not have to test so ofen and that you also were Lupus Anticoagulant. (Hope I remember right now).
I wish you could have tried to selftest as I have learnt that Eliquis is not approved for those with atrial clots which you have with a stroke. Why did you not go over to LMW Heparin(Fragmin)-shots when leaving the Warfarin?
Best wishes from Kerstin in Stockholm
Tofino, I think you are in Colorado and use Jill Schofield, who did an advanced residency directly under Professor Hughes , correct? I do know my consulting Rheumatologist at London Bridge/ London Lupus center( Dr Natasha Jordan and Dr ( prof) Hughes refer to her for US patients.)
Thank you Tofino. I personally did terribly on LMWH.
Eliquis makes me very nervous- but it's just down to lack of trials. If your body does well, that's your trial I think.
I'm not doing well on hydroxycloraquine AT ALL. Headaches are worse- never knew there was a connection. All I can say is I'm quite busy running to the bathroom. I can get to 175 mg and that's it. I'm way too sick with it. My rheum wants me at 300 but I really can't. The brand name here may not be any better. It's not the same manufacturer as zentiva in England.
Hi KellyInTexas, I hope you are not impacted by the storm and are okay where you are?
Yes, that's all correct about Dr S and her qualifications. You say it all better than I do! I think that referral is golden.
I am not worried about the lack of trials. The trials that have been done using xarelto, and I would not take that drug. My Physician's Assistant tried to sell it to me - as a paid representative of xarelto by the way.
It's amazing how much sets off the migraines. Before eliquis just about everything was a trigger. Now I can have 3 or 4 triggers before I get the headache. And my body seems to respond to the aspirin better than it does plavix, which gives me headaches. Why, I don't know but I've thoroughly tested it out now, and no more plavix for me.
I tried a generic plaquenil (zydus), since who can afford the brand name med, and did terrible on it. Now that I'm more stable, I'm going to try another generic (santos) and see if I can tolerate it. With the first one, I could take 50 mg and within 30 minutes have a headache. No digestive upset tho.
Good luck Kelly.
Hi Kerstin, I was on warfarin for 10 and a half years, and worked with a neurologist for 9 and a half years for the migraines. I've had DVT and PEs. I am Triple positive with high titres, and have Sjogren's and Hashimoto's.
Self test didn't work for me. I desperately wanted it to! The comparison tests of the unit to the lab test were way off and inconsistent, either lower or higher. So, sadly, I'm one of those who can't use the self test. My INRs for all those years were very inconsistent, despite obsessively monitoring food & lifestyle.
I had to retire early due to the migraines. When it was presented to me that eliquis might help them, I was ready to give it a try. I had debilitating pain, 6 or 7 days a week.
My doc, Jill Schofield, is heaven sent. She is indeed an APS specialist, no doubts there, and trained with, and works with, Dr Hughes. She's top notch.
I'm not trying to promote eliquis to anyone, I'm sorry if it sounds that way. I'm just telling my experience. From reading the forum and talking to my doc, we are all so different, with different needs, experiences and results. I'm very thankful this is working for me
Anita
Yes, thanks for clarifying that, tofino. The numbers do matter when it comes to the RAPS trial, but your body is your body, and you have every right to do with it what YOU need to do. It does make me a little nervous, simply because I tend to be data driven. With that said, I trust Jill Schofield. I wouldn't let anyone else but her come near me with a bottle of eloquis!
It's early days, as the Brits say. You, in a way, are a brave soldier for us, braving a new path. So I solute you! ( a little cautiously but with complete understanding and happiness you are better! That's all I care about!! Many of my docs here are saying things along the same lines about the new NOAC's, by the way. And eliquis is one they would trial if all else fails. I myself am advocating liquid draino. It unstops most stopped up pipes- why not arteries and veins?!?!
Docs tend not to be amused...
Hi Anita,
I also think it is very difficult with the big difference between fingerprick and vein-tests and I am most frightened if I need to be in hospital for some reason because only I can handle the ups and downs especially as I use greens for it also.
I wish you luck with your anticoagulation. We know our body best. I am glad you have got such a good Specialist as Jill Schofield.
Kerstin
Nancy, what meter company do you use - i think i need to do this - thanks
Annette
I have a CoaguChek by Roche. Same meter used in Europe. I got it through Alere (medical supply house in US). My insurance (Medicare and supplement) pays for it. BUT, they are very strict. Your physician has to write a prescription for meter, target INR, number of tests per week and diagnosis. You must account for every strip. Additionally, you must report INR readings to Alere every time you test.
Then, someone ( either your MD or Coumadin Clinic ) must adjust your Coumadin dosage based on INR readings.
My doctor allows me to adjust my own dosage. If I have a problem , I contact him.
Alere's number is 877-262-4669.
Additionally, you must do dual checks initially ( lab draw and meter reading) to insure meter readings are accurate for you. I did 5 dual tests at first to compare results of meter to lab. Then periodically you must do dual checks to continue to ensure accuracy of meter. I now double check ( meter and lab) every 4 weeks.
IF your insurance won't pay, you may be able to order direct. Call me if you feel this is your best option. PM me for my phone number in West Virginia.
I just got this new meter in May and it is not difficult to use. You just have to get used to it and READ all instructions.
Nancy
Please be aware, though, that the Coaguchek can give inaccurate INR results, because the testing agents used involve phospholipids--which, of course, can interact with our antiphospholipid antibodies. The package insert provided with the test strips thus states: "The presence of anti-phospholipid antibodies (APAs) such as Lupus antibodies (LA) can potentially lead to prolonged clotting times, i.e., elevated INR values. A comparison to an APA-insensitive laboratory method is recommended if the presence of APAs is known or suspected." My INR on the Coaguchek was 2.8 when I had a second DVT this spring--and when the doctor then did a veinous blood draw, I was at only 1.4.
And actually, the issue for APS patients who are Lupus anticoagulant positive (like me) can be even more complex, as the veinous tests can also be affected by our various antibodies. After several inconsistent INR readings, my hematologist changed to testing my Factor II Activity levels and doing a chromogenic factor X test--blood tests that are APA insensitive. For more information on that, try this link: ncbi.nlm.nih.gov/pmc/articl....
Good luck!
Yep!
That is why you must do multiple dual tests (venous draw and meter to compare results) initially to insure accuracy. AND dual tests periodically thereafter to insure no change between the dual results. And you only have a three hour window to do the dual draws for comparison.
I've read that as many as 30-40% APS patients are unable to use meter as it is inaccurate for them due to the thromboplastin reagent on strips reacting with LA antibodies. BUT some can still use meter if there is a CONSISTENT difference between venous draw and meter reading. For example, always a 1point higher reading on meter compared to lab reading of INR. (Meter =4.5 and Lab =3.5---a consistent one point difference between the two, or a .5 difference consistently for you, or whatever.
In addition, meter provider instructed me NOT to swab finger with alcohol prior to pricking for test. Just soap and water and dry with clean towel. They said alcohol can affect the reading
We are all different. Meter works for some and not others. BUT, you will know if it works for you with dual testing. It is a huge advantage if it is accurate for you. Studies have shown that an accurate meter enables patients to stay in target range more often compared with those who do not use meter.
So far, it is accurate for me. But every 4 weeks I do a dual test to insure it stays that way. If it happens that meter becomes inaccurate for me, then I will quit using it and go to lab.
Nancy in West Virginia
Well said!
Kerstin in Stockholm
I learned most of this from Sticky Blood-Hughes Forum. Well done you all!
Nancy
Hi I had cognitive issues falling over bumping into things and loads more it is worse when my Inr is low,
I was seen by a neurologist in guys London appointment made via st Thomas haematologist
I was put on placquinil ( check information on here regarding low stocks and different products )
Well it took less than 5 days to work balance and other symptoms really improved, infact I wrote to the consultant to say how grateful I was.
It might be worth seeing if you could be prescribed it
Good luck
Hydroxychloroquine (Plaquenil) is an extremely useful drug in Lupus and Sjögrens Syndrome. It is particularly effective in helping skin rashes, fatigue, and aches and pains. One of the additional actions of Plaquenil is as a (mild) anti-clotting agent – rather like junior aspirin. Thus, in Lupus patients with aPL it might well have extra, hidden, benefits, says Professor Graham RV Hughes at the London Lupus Centre, London.
HollyHeskiAdministrator
Hi, welcome, what medication for your APS are you on?, sounds like your blood is not thin enough - have you a specialist? This is important for us to have someone that knows this disease.
You can still have TIAs & strokes without them showing on a scan - we are prone to having multiple micro clots, which dont show up.
In the pinned posts, top right corner, is a list of specialists, if you are not under one yet get your GP to urgently refer you. Your slurred speech needs medical attention. xx
How did you locate your micro clots?
I am on plaquenil and warfarin (coumadin) can you tell me how you discovered the microclots?
Hi, micro clots are not seen on scans, they are diagnosed by your specialist when looking at your whole health picture and symptoms..
Many on here have posted about this as they have been made to feel 'its in their head' as no evidence has shown.
Here is a paper ApsNoFab has posted before, detailing the link between micro clots and Hughes.
Hi and welcome to our friendly site for HS/APS!
I agree with what the others have said. I live in Stockholm and have had a lot of neurological symptoms. First of all we need a Specialist of autoimmun illnesses who knows this illness and have had patients with our symptoms and that is why he knows how to treat us.
You say your INR is on point. What is then your therapeutic level and how often do you test in the vein at a lab? Do you also have Lupus Anticoagulant positive?
I am on Warfarin which helped with my symptoms 5 years ago and has been my lifesaver.
We need to keep a rather high INR to feel ok. I need to have an INR of 4.0 and to know where I am, as to the INR-changes, I selftest every second day.
I suggest you try to educate yourself about our illness as knowledge is power. I suggest you also read "Sticky Blood Explained" by Kay Thackray. She has neurological symptoms and describes them very well in her book. Also good for relatives to understand how it is to live with this illness.
Hope you will stay with us here!
Best wishes from Kerstin in Stockholm
Interesting read, thank you for sharing this.
Aloha from Hawaii!
Welcome and good health to you.
I have experienced similar symptoms when my INR is too low.
I take warfarin and go ti a clinic where the pharmcists take the blood sample, test while you wait, and advise you as to your proper dosage. It helps a lot to stay at the high end of my therapeutic range.
My friends are the first to notice if I am displaying symptoms.
I hope you get help soon!
Kerstin from Hawaii. ..
Sometimes we all over think things. Doctors too. On the " just slow down and put 2+2 together:
The circulatory system is not a localized system: it goes evereywhere in the body. The immune system, though its system "managers" are found in a few glands and organs, also reaches into the entire body. Now lets put this 2 and 2 together: Injuries attract the immune system's attention. This can be an obvious cut or infection, or a problem (they occur every day!) in a vein or capillary. The immune system sends in the troops, which is good, except in patients with autoimmune conditions, those troops have an incorrect "list" of enemies to attack. Those immune systems with an APLS error on their list will attack a component in the blood coagulation cascade or a section of a capillary wall. This autoimmune blunder results in further damage, which signels even more autoimmune troops to come into that area. Repeat. Repeat. Repeat.
This is why our symptoms can be so varied. Doctors want clear evidence which points to an easy diagnosis; like a broken leg, or pneumonia (wheezing and shadows on an X Ray.) Our disease is more complex. The establishsed diagnosis relies on miscarriages, strokes, TIAs, DVTs (clots in the leg,) or pulmonary embolisms (clots in the lung.) But, to repeat, the circulatory system goes everywhere. And the immune system goes everywhere. And once a tiny abrasion attracts an immune system mistake to a given, teeny tiny place and mistakenly attacks one of the body's own cells, the original problem is not resolved -- which means that the immune system again attacks that same spot.
And that "spot" often can be near a neural junction in the spine or the brain. Which results in slurred speech, brain fog, balance issues, . . . the list goes on.
THis is the reason why we all urge all patients to consult with a recommended, experienced specialist! A lot of doctors are going to dismiss symptoms that are not mentioned in that "standard diagnostic criteria" listed above.
(I find this amazing, as Dr. Graham Hughes first IDed our condition and the blood work usuallly associated with it by investigating the then unknown cause of a peculiar gait called "Jamaican encephalopathy syndrome!" In other words -- it was balance and walking issues which first clued a doctor into our syndrome, but now, most doctors discount balance and gait issues as a symptom of APS! Go figure!!!)
There is good news in a diagnosis of APLS: most -- not all! but most -- patients will see symptoms resolve with the proper anticoagulation treatment. In my case, taking warfarin was a life saver! I was experienceing brain fog, "panic attacks" and vision problems. Excepting an inability to read with bifocals (need separate pair of reading glasses) my life is totally normal. I was diagnosed in 2001 and I still hike, and bike and lead a completely normal life.
Here in the States you can find APLS experienced doctors via a web group called "APS Action."
Good luck!
Gina in West Virginia
Great explanation Gina!
In my case I did not get back the ability (normal) to process thoughts. Last night we went to a party and a band member from Johnny Limbo and the Lugnuts (well known in our area) sat next to me, we chatted, and I forgot to tell him there an awesome band because I didn't think of it at the time. Very frustrating...
well, now that you mention it . . . forgetting to say things, usually complimentary, is something I do too, Though I attribute this to age and not spending enough quiet/prayerful/meditative time.
Thank you - You are very helpful
Thank you so very much
You should have a cat scan which will show if you have had another stroke
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