Then when rechecked 6-12 months later, clot is gone... am I understanding this correctly? Thanks, Cindy
I’m seeing posts on here that people ... - Hughes Syndrome A...
I’m seeing posts on here that people are stating they have had lesions/clots found in body’s organ and are put on warf then disappear? You?
Written by
Wittycjt
To view profiles and participate in discussions please or .
24 Replies
•
Well I was diagnosed 2015 and have had about 3-4 MRI locally and told nothing on them then last one ordered by Guys and large ones on and I am on warfarin. Me myself just think mine have been there all time but not told of.Prof at Guys said you need to know what you are looking for ?
So no improvement for me on warfarin Wittycjt
If you get anticoagulation which is put at a steady and INR high enough that will help you to avoid further clots (even micro-clots). Most of us have difficulties to keep the INR steady all the time and high enough. Doctors do not understand how important it is for us with our very thick blood to be properly anticoagulated.
These are difficult questions that should be answered by a Specialist.
Kerstin in Stockholm
Fra22-57,
You should be well anticoagulated. How is it going with your CoaguChek XS-machine? There is no real improvement when the INR is too low or unsteady.
Have they suggested LMW Heparin (Fragmin) for you instead of Warfarin?
Kerstin in Stockholm
Still waiting about self testing.was 2.7 last week n 3.4 this.I am up and down.coagulation department has kept me at 8mg each day but 9mg Mon. Have been mostly 8's and 2x7's.
Have to stay warfarin only Kerstin
I am sorry but you are not properly anticoagulated. If you are too low in INR (what is your actual therapeutic range?) you should have a Fragminshot to take. Why do you not have that? You are seeing good APS-Specialists at Guys?
Why do you not get selftesting as they say no to LMW Heparin (Fragmin)? What are they waiting for????
Kerstin
My range is 3-4
Guys say heparin shot if under 2.he has sent clinic letter to my rheumatologist and GP stating that.goodness knows why not under 3.Guys can't prescribe only inform my rheumatologist. Self testing still waiting.
For me warfarin was a life saver. Started the meds and those”panic atacks” and migranes? Gone. Caput. No more One hematologist who consulted with me prior to my hip replacement wanted me off warfarin as my blood values currently are “boring” with respect to APLS (and due to trasfer from paper to electronic data as well as doctors moving from one practice to another) those positive numbers from 2000-2001 have been lost.) And I did try lowering my INR. I actually made it down to an INR of 1.7 before I had another “panic attack” which I now know is a TIA.
I then increased my warfarin dosage back up to an INR of 2.25-2.5, which is low but seems to work for me. I do attribute my now “boring” antibody numbers to my gluten free diet. The more I read about how gluten is (or more acturately, is NOT) digested in the gut) the more I think it is factor in a lot of chronic ailments.
But as is reapeated often here: “we’re all different.” The blood coagulation cascade is very, very complicated. So again, this is why we all need to consult with a doctor who is expereinced in treating APS.
Gina
in 'normal' people, treatment with warfarin will stop further clotting and then takes around the six months to resolve the clot. (the body will resorb the clot and can even build veins around it) eg. DVT after long flights or periods of immobility, which cause the blood to pool and clot. I do still have residual damage in my lungs from the PE's I had nearly 6 years ago and before I was on permanent anticoags and started on the long and crazy diagnosis to Hughes.
Thank you for answering my post😁
Sometimes threads go off track here! I have had a clot in my spleen in the past-on Clexane that went away eventually so I'm still keeping my fingers crossed that the Rivaroxaban keeps working! There's not much else left in the Pharmacy drawer!! Saw my Rheumy today and he's happy enough but has referred me for a CT to check out lungs as apparently there could be a bit of interstitial lung disease and he just wanted to rule it out.
I have just prayed for you, hopefully all will be okay. I guess you are liking the riva good that you can have it! May all be well, Cindy
I have never had one (bit of a leap of faith there) but there are antidotes now. I certainly don't have crazy bleeds like when INR jumped up to 7's and 8's. I looked like a Zombie sometimes after working in the garden and getting scratched without realising!!
They found a few lesions in my right brain 5 years ago MRI, has not changed or got more for the past 5 years which is a blessing to me already, but those lesion hasn't gone away though; just need to make sure properly anti coagulated and inflammation under control
KellyInTexasAdministrator
Cindy,
This is an interesting question, but a year old.
Would you mind asking it again if you still have the interest?
I would tell you that blood clots can be different than lesions. It depends on where in the body, length of time it remains there. ( damage done.)
One example can be the brain... a hemorrhagic stroke might leave a scar on the brain due to damaged tissue. That damage could well be classified as a lesion depending on the severity of the bleed and how quickly the bleed was brought under control. But that’s not a clot, is it?
An actual clot in the brain can also impair oxygen to the brain tissue, as you well know. ( I feel as though I’m preaching to the choir here- you being not only a nurse, but so very sadly a stroke survivor yourself.)
But... the evidence you would see would be a lesion.
Seizures ( depending on cause) leave ,” lesions. “. These can simply be incorrect cells in the wrong place. Example: cortical dysplasia.
MS: lesions are seen on myelin sheath. These are simply scars.
“Lesions” can be a very vague medical term
In medicine. It can be very specific to certain sub specialization in certain clearly defined settings.
To answer your question about warfarin, it is not used to break down an acute clot in an emergency situation. It’s to prevent future clots from forming.
Heparins are used in acute clotting events.
I realise this post is a year old, i was reaching out to ozchick because i realised i left her without following up on her lung disposition.
My initial question was directed to those that had posted that their “clots had disappeared”.
No warfarin cannot break down a clot emergently but it can over time.
I was taught this in college for nursing but then had seen others post on here that their clots had “disappeared”. I was taught they wouldnt go away but obviously this was wrong as several on here have had them go away/ disappear. As in Gina’s case, as well as, Ozchick.
Currently I was asking Ozchick about the outcome of her lungs. I am glad to hear things were well.
TPA- Tissue Plasminogen Activator is a rapid acting clot busting drug that if given within just three hours from onset of stroke it can bust up the clot without leaving residual side effects.
It is on this note...why i am always telling people with headaches to get to the ER asap. So that if it is a clot they can get this tissue saving medication and maybe not have long term disabilities.
I was always the one preaching this to people. As a matter of fact, i have been known to save people because of this. They have also been saved because they have went and found it wasnt a clot but a “bleed” on their Cat scan and you cannot have TPA with a bleed because you could hemorrhage to death. So they would have to have emergent brain surgery instead.
KellyInTexas , To clarify: When i had my initial stroke I thought i was having one of my “typical” hemiparegic migraines that i had had quite often (before) i had had my stroke and was treating it the way i always had but this time the headache did not go away. So i went to the ER but had waited a smidge too long and they are sticklers to time constraints due to the serious nature of the effects that TPA can have- the initial stroke did not leave me with residuals... It was the lack of proper anticoagulation after my heart surgery that caused the problems of second and possibly third strokes that caused the problems. I couldnt have the clot buster at that time because it was too close to the open heart surgery.
I thought i had explained this to you on our phone conversation a while ago when you first came to this site and i reached out to try to help you I hope this clears things up. Apologies for your confusion, Cindy
KellyInTexasAdministrator
As I stated, I think it’s a very interesting (and important question.) I’ve had the very same question myself. This is why I think it may be worth putting up again.
I only read the title of your post, I was not involved in any other conversations in what followed, so I only directed my comments directly to your post itself.
I was not confused, just responding to your post itself, no ensuing conversations you had engaged in with other people.
What is confusing, is the nature of APS. Even world renown experts in the very same field can have differing opinions on the technicalities and manifestations of APS. Now THAT’S what I call confusing! Thankfully GHIC has launched to bring unified recearch and best practice together internationally.
PS:
*if you re put up the question, I can add in my report note statement from about scarring in Brachials, from DVT’s ... ( which contributes to more DVT formation)
*Then just a few weeks later in London ( May 2018) with top vascular surgeon- DVT’s cleared- and no scarring!
So this can be in veins also....
Hi Kelly,
In regard to scarring in Brachials, from DVTs.......could you start a new post on this subject please ? I am sure others would find this information of interest.
