My family and I are still trying to figure this Syndrome out with regards to how it is affecting my particular body, and I'm thinking there must be some commonalities between all of us. ( remember, I'm fairy new to this game we all got kid napped into playing, so I'm still trying to figure out the " rules.")
What do you guys think of this theory?
Starting early July I began re clotting with a brand new DVT , so I'm in the throes of a new clot I can't resolve. I'm running low grade fevers. Chills and flu like symptoms. We all know this score. It's three weeks of it. Im quite sure there is no underlying illness, just the auto immune business.
I'm having to still work part time , as needed, as we own our own companies and I must make payroll, help make decisions, and be supportive of our employees and be co- responsible. I also 5 doctors appoints last week alone. I'm really not complaining, as I feel fortunate most of the time I can rather easily do this and I think it's very good for me. I'm busy also with a nearly 16 year old son and all his cousins ( same age) and friends - normal busy family home.
These past few weeks though, as you have all had them, have not been healthy for me. I'm assuming I'm in a flare.
My INR is steadily declining despite greens staying steady, warfarin staying steady, ( warfarin mg as follows: 16, 16, 16, 17...16,16, 16, 17)
That's been holding me for a few weeks between 3.5-4.0 which is target.
Then I think I went into flare. Slowly dropped and immediately clotted. So I changed to 16, 16, 17, ..... 16, 16, 17
That helped only for a week or so.
Now I bumped one night a week to 18 and got rid of one of the 17's...( my INR had fallen to 3.0 and 3.1 this past week. That was by fingerbprick, so bybvein value 2.8 range. ) This helped immediately. Two days later ( yesterday) I was at 3.9 and low INR symptoms like headaches gone. Flare symptoms still with me though.
Because I have a home checker , I call my hematologist every Thursday and report in with my INR. I check it every day right now. It changes that much. I Bridge with Lovenox if 2.8 ( ish) or lower. My heme has learned I manage my Coumadin better than he can, because I am so unstable. He gives me the guide lines- no changing more than one mg at a time, and wait 3 days . Keep close contact with our office. Call with any big changes that occur.
So, to recap question, do you guys find that if you are in a " flare" you need to increase your Coumadin? How do I know if I'm in a flare? My doctor has never explained a flare.
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Not being on warfarin I cant say but when I have a flare up or any type of virus, I immediately increase my dose of clexane and continue to take the higher dose until Im over it.
We're very similar in what's happened and happening to each other as we already know!
I've been playing this game for 18 months and I find that the rules are ..... there are no rules!
My INR has dropped significantly this week after an iron infusion and I've increased my warfarin and currently bridging. But I still get symptoms whilst bridging as well.
As for the rest of the time my APS seems to do whatever it likes and just when I think I'm in a routine and know 'the rules' - they bloody well change!
It's a difficult condition to manage and I'm not filled with joy at the thought of playing this forever !!
I'm never really stable and self manage my INR as best I can with a little help from my dr. I hope you figure it all out and become more stable soon x
I think I remember that you are not Lupus anticoagulant positive like I am. I am sure my INR-variations are due to LA (at least HS/APS). It does not have to do with the CoaguChek XS.
I had today 6.2 on CoaguChek XS but that is too high so at once I took 10 brusselsprouts and tomorrow with the usual green vegs for dinner I will be back at perhaps 5.2 (I just guess that from experience.) When I have an INR of 5.2 I have a vein-value of 3.6 (My therapeutic range is put to 3.5 - 4.0.) I had 5.2 the day before yesterday when I also had to test in the vein at the hospital-lab where I do all my vein-tests. It was as I wrote 3.6 in the vein.
I do not know what a Flare is. I know I do not like when the wheather is low-pressure or thunderstorms. Then i get headache and feel bad.
I aim to always be in range otherwise I get my neurological symptoms back. I always do notes of my numbers etc etc.
You say you "clot" - do you mean you get your symptoms back or ....? What INR did you have when you had your last clot?
It is good that the difference between your vein-draw and fingerprick-draw is so small as under 0,3. Is not the difference bigger one day when you have a high INR?
So I can not answer your direct question when on a flare as I never am on a flare only get my symptoms back when I am a bit low.
No, I do realize it has nothing to do with coagucheck xs. ( I'm checking each new test strip batch with vein value at hospital thanks to your advice, do thank you!)
A " flare" is what rheumatologists in English call an exacerbation, or a time of active disease presentation , more than normal, in the body. It is more commonly associated with lupus. You will hear of ,"Lupus flares". As APS/ HS is so tightly linked with lupus, we also have ," flare " periods in our disease process.
A "clot" is the same thing a a " blood clot." Depending on where it is, it can be a superficial clot, ( thrombophlebitis, which my vascular surgeon has told me is an antiquated word he preferres not to use.
It can be a micro clot, or, in my current situation with my arm, it can be a large DVT. If a clot is ," occlusive" it means it has occluded the vessel in which it is located, and has impaired the blood flow. My DVT has 100% occluded the blood flow. I have no , as in zero, blood blow the entire length of the medial brachial deep vein.
I think if you have got Sneddons or whatever you have- I know "Flares" have to do with SLE (Lupus) but I am probably primary APS - you should first of all see to that you keep your anticoagulation in range. Could that be important?
At least that is important with primary APS and perhaps not so important with Sneddons syndrome.
When you get your clots (which are not your symptoms back) have you ever tested your INR at the same time?
I think I have a lot of micro-emboli as they have never found anything on me but tripple-positive with persistant high titres all the time. Also Pulmonell Hypertension and leaking heartvalves (Tricuspidal and mitral valves).
To avoid "occlusive" clots should you not be better anticoagulated. As soon as I get too low in INR I get symptoms back that I believe are micro-emboli.
Yes, I'm I'm testing daily, and I'm clotting even when in properly anti coagulated at 3.2 or 3.5 or even 3.6 by finger prick. For two weeks that high. But then for no reason I drop. But the clotting symptoms begin when I'm high. The literature says 29 to 30% of patients clot despite being properly anti coagulated.
I think I may start clotting when I'm a little low but just don't feel the symptoms. That's also possible. But I clotted so quickly and so aggressively the dates don't match the scans.
It's hard to learn from so it's hard to teach and learn. I'm so sorry. I'm not more helpful. I'm trying to save the arm so others don't have this problem. I'm a little too young. It's far more likely we save it than not, but the "collateral veins" are not looking great and getting damaged, and my INR is over 3, so they are telling me there is nothing we can do.
Your INR sounds low to me but you say you clot when the INR is high?! How high?
I should also clot if I had that INR you speak of on fingerprick-test. We are all individuals and some of us have several autoimmun illnesses with a lot of different symptoms.
Probably she means me, in Texas. She had sent me a note on the importance of adding plaquinil ( or even persantine I heard Hanna Cohen give in a patients day presentation may 2015) for folks like me who keep clotting even though our INR's really don't go significantly low.
I told my hematologist about Hanna Cohen's suggestions at the latest rheum convention in London last week ( top ten topics in rheumatology) and he said... perhaps this is not a new clot. Maybe the deep vein of the brachial has simply swollen shut. Try an over the counter hydrocortisone creme and apply it topically over the entire length of the vein, he suggested... ( even though on June 21 I saw in the Doppler scan the blood flowing through and the vein compressed. )
Have you ever heard of this?!?!?!?!?!
I told him I would have the vascular surgeon look at it the next day, which he did. The vascular surgeon worked me in immediately. He determined there was no new/ current active inflammation to the vessel wall, and there was a new clot occluding the entire length of medial brachial- a huge DVT. He could determine it was a new clot/ DVT because:
1. The blood was clear- he could see through it.
2. If the blood is old, it looks ,"speckled".
3. The time frame that determines this blood clarity and therefore dteremines the definition of " new blood clot" or "old" , or "chronic" blood clot is 4 weeks.
I went to my hematologist's office the very next day and physically had a meeting with the nurse, as The hemeatologist had told me if it was determined it was indeed a new clot, or an old clot, and not simply severe inflammation if vessels of brachial ( which is alarming in and of itself!) that he would put me on plavix.
I haven't heard a word. That was Wednesday.
I've just put myself on about 3 jr strength asprin a day in the mean time.
By the way, saw my rheum Friday. He's upping my plaquinil. He also thinks I have incomplete sjogrins now. It's been questioned for a while. My RF has been through the roof. I had a hysterectomy, cystocele, rector ke, and enterocele all at the same time about 3 years ago. ( woke up in ICU surprise surprise...) kept getting readmitted for ileus. We now know micro clots to bowels. Strange thing is, starting this January, I started ,"spitting the stitches" from vag cuff. My surgeon , actually a nice woman friend of mine, is completely perplexed. She said my tissue is just not holding up at all. She said during the surgery the tissues integrity was poor. Surgeons call it " wet toilet paper tissue."
This is why everything proplapsed so badly in the first place. So likely it's sjogrins.
Plaquinil! So sorry! Yes. I am but I'm not fully to titration. I was almost at 200 and now I'm being raised to 300. I'm sorry. I thought you were asking about the plavix... too many , "P" medications for my sleep deprived brain to cope with.
I don't think I've had more than 3-4 good hours since July 5th when I started reforming this DVT. When I lay down it gets far worse...
The vein will likely die and the collaterals are now taking over but it is a painful process. The hand and fingers are tingling and stinging.
Surgeon said there is a ," distant possibility" I'm going to loose the arm at the shoulder. We are monitoring closely. So far the collateral veins are not doing as well as he would like.
I have enough similarities to have made me look at it, just like caught Cindys attention. If I remember correctly it was almost exclusively neurology clotting and very little clotting else where. I remember that's why I didn't pursue it further...?)
Like I mentioned to Cindy, I'll re open that question and ask my neurologist and heme. ( you've clotted in other places...)
Sneddons accounts for Only clots in brain I think, and no inflammaton of Vascular / arterial systems in brain with snaddons.
It's the APS components that accounts for clotting through the system, not only limited to brain.
I was drawn for APS antibodies again shortly before I left for Princeton. My rheum called while I was there. My aCL and B2GP1 are positive again. a urine check was run. ( this was on Friday- before I became symptomatic with a uti two days later) and all was fine. Uti is not why I was running fevers and feeling badly in previous comments above. But in this blood draw my rheum drew my WBC count - it flagged low. In the low threes. Probably why I then quickly got a uti. It was not a normal strain.
Something's amis with immune system. Maybe it's a " one off"
Going in again today and Friday to see.
I don't know about sneddons yet but I am wondering. I will ask my neurologist in October. I think they really do look for evidence ( TIA, etc) along with symptoms. We will study my venogram results.)
In Princeton in good arm decided to clot. That was fun.
Are you saying your left arm is a problem now, geeez when are you gonna catch a break?trying to think why your WBC are so low? What does your physician brtother n law say?
Yes, imy good arm ( left arm) is having trouble. My brother in law( physician) in Austin isn't very good with APS unfortunately...hes about to retire so... I haven't told him actually!
im waiting for more info. ( I'm like that. But as soon as I get data it changes...)
Ah... yes, that was my question. Does a diagnosis of sneddons require further or additional treatment?
I think this is, as always, a very complicated and tangled ball of yarn. As auto immune diseases tend to travel together, I'm starting to think vascular/ neurological ones do as well, or perhaps they are just sub sets of one another and different doctors have isolated subtle differences between the pathologies, so a different name has been assigned , but in essence The overarching diseases the same, much as lupus is the overarching umbrella that APS/ HS falls beneath. (?)
Am I forgetting to answer a question/ respond? Maybe to Kersten. I'm at a loss as to the INR. My Heme said I can have it "close to 4" then at last meeting he said, " we can go as high as 3.5".
I went to his nurse and reminded her that doctor Hughes told me personally my INR needs to ," be at a minimum of 3.5, and many patients feel they are best close to 4."
I myself feel best at 3.7 or 3.8
I am re examining sneddons. My MRI scans are clean. However, I do feel I may fit this diagnosis squarely. Especially with regards to the visual issues. They are severe. It is not the typical double vision others discribe. My optic nerves are dying. My neuro cog tests are actually being measured by base lines and are declining, however my INR was 1.8 in May with an active clot and I was hospitalized the next day... and I can't visually see some of the tests. But the memory recall on vocab lists was WAY low- bottom 1%.
( I used to teach three different foreign languages at the secondary level! I'm a linguist!!!!!! This is Certainly ironic. Sometimes I can function in one language better than in others... pick a day, pick a language. Or I can find a word in another language- not English, my mother tounge. My neurologist explained that's how the brain files. That's why Alzheimer's patients use curse words. If they can't find a word, they "reach further back into the file." I'm glad I have extra files there....
I also experienced transient aphasia and agnosia before anti coagulation. We auusumed it was my seizures- but my EEG's were ok- but then again- even with 72 hour EEG seizures can be missed if you don't happen to have any during that time.
So it's interesting that all just went away with thinned blood. But not all symptoms.
Also, we are flying back to Princeton early tomorrow. We didn't finish our projects at the house in Princeton. I've been alone this week- hubby and son and nephew coming in tonight from west Texas. ( we have been raising our nephew this summer. His parents are in the middle of a divorce so he's the same age as our son- who needs silly drama? Come have fun!) Busy packing. Getting our dog in good order and home. Friend house / dog sitting. Our home is on the lake- our dog is a lab- so lots of swimming!
The only thing I will add that is concerning to me is I saw my rheum last week. He discovered I'm quite weak on left side compared to right. ( I had a suspected TIA last August 19 2016 but MRI is perfectly clean.)
This has been noted before by other docs, but it was especially prominent the other day. (?)
Did he also take a vein-test for INR when he realized you were weaker on the left side? My TIA or mini-stroke was leftsided (2002) but the symptoms were on the right side of the body.
No you didn't forget to answer anything I just noticed you hadn't posted anything and wanted to be sure you were ok. I almost called you. Maybe we could get together while your here if you're up to it?
Sure. I should have more time this time/ I HOPE. Last time we ran out of time. That is why we are having to go back up. I was sick today. I have a uti. I'm in antibiotics for the first time sine APS diagnosis. Cefuroxime 500 mg. 14 days. I've been fighting it since Sunday- waxing and waning.
Had to bite the bullet and get a urine check today. Sure enough. Before I fly out. He's culturing it and making sure it's the right antibiotics- will call me in Princeton if we need to change but starting me on this to start with.
Yes Cindy- we flew into Philadelphia yesterday evening. ( let's switch to private message since we are off topic for the forum and the original topic question posted.)
Our daughter attends Princeton university. ( one hour out of Philadelphia.) we have a home here. I am still sick, running fever, DVT in arm but stable. I had my APS antibodies run Friday. Got results today. They are up again- positive. Sick or not- I am still needing to raise my children. Here for family reasons. But all ok!
I'm wondering if it's possible that my antibodies rise when I ,"flare?"
I don't know. I'm really new at this as I'm only newly diagnosed. This is my first time to go positive again. But I've sure been clotting. ( getting more DVT's.)
I really wonder is this is why I'm requiring more Coumadin. ( warfarin. ) but this week I'm requiring less. I have a UTI- on anti biotic- keflex- which both doctor and pharmacist said will not affect INR. I'm so confused, Kersten.
In the beginning you told me to take notes of all I eat, Meds I take. I'm doing all of this. Often I mention your advice to my doctors.
Sarah ( our daughter) is a scientist in her PdD program at Princeton university. She also works here, year around full time and also teaches. So she has no time off - she travels for conferences quite a bit. She leaves for Switzerland, Germany and France next month. She will be gone 5 weeks. She is presenting in Germany.
With good Doctors as you probably have I can not understand that you are too low in INR sometimes. I am struggling to keep the 4.0 in INR and selftest often now as it has been a bit difficult as the INR has been very high.
My theory (like prof Hughes) is that we must keep a steady and high INR not to have trouble. I know we are not twins and very different but when I read about Sneddons this week it sounds like my illness as well as HS/APS. There is also abnormal high bloodpressure and heart-issues with it. I have had that before anticoagulation (high bloodpressure that is). They talk a lot of Livedo Reticularis and when it appears (cold or heat etc). I am primary APS and that is probably why I think I have Sneddons Syndrome also as they are very alike. You are diagnosed with Sjögrens and Lupus also??
Kersten, I wouldn't worry too much- I've read quite a lot on it. I've not spoken to my neurologist yet. I think it comes down to the skill and over all balance of the neurologist.
I have not read it involves the heart and high blood pressure. I've read that basically it's only " brain involvement" clotting without inflammatory involvement. A majority of sneddons patients present with APS antibodies. I've read different report stating percentages differing from 60 % to 85% . ( British medical journals reported higher prrcentage.)
I find it very telling the Kelly ( Yellk) is diagnosed without hard scan based evidenced- and has a top notch London APS specialist Neutologist. I would message her and ask any question you have.
Oh- and as to your other questions- my rheum suspects incomplete sjogrins now. I see him sept 5, I'll ask then. No, no Lupus at this time. My antibodies are positive again. And- my WBC count flagged to low without any known infection
In other words- there was no infection at the time the panel was drawn. You had mentioned " I guess that's why you were running fevers" when I was feeling so sick. The answer is no- I had no UTI at that time. My immune system is not working properly and we don't know exactly why.
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