[marbiegreen]

Hi there, I have had Lupus for 23 years and was recently diagnosed with APS. I have a huge decision to make and I don't know what to do. My problem is that my Rheum tells me that the risk of me clotting vs the risk of lifelong Coumadin is almost equal. What do I do!! I have never had a clot before and it was only discovered because I am flaring and he did intense bloodwork. Am I missing anything I should know??

 

[Raglet]

hi there

APS is not generally dx unless a person has had a clotting event. A clinical event (clot, multiple miscarriages etc) is necessary for a dx of APS. Many test positive for the antibodies but never clot.

Usually if a person has not had a clotting event the most they take is a baby aspirin. Personally I would avoid coumadin if I could, having been on it for 10 years I can totally guarentee that it is a total pain !

If you google hughes foundation you will get a lot of really good info on their site (the Brits calls APS Hughes Syndrome). I have lost the link else I would post it.

hth

raglet

 

[Katharine]

Hi,

I just take 100mg aspirin a day.

Katharine

 

[marbiegreen]

Hi,

I just take 100mg aspirin a day.

Katharine

I am already on 325 mg ASA for some time but apparently ASA does not work for APS. Thanks though!

 

[Zoi]

Hey there,

I'm sorry but what kind of doc was it who told you aspirin doesn't work for APS?!!! That is completely inaccurate!! Aspirin can work wonders for aps patients who haven't had a clotting event and sometimes is taken by aps patients who have had clotting events too along with their other meds (i.e. heparin or coumadin).

Did you maybe mean that you've had a clotting episode or that aspirin alone doesn't reduce your symptoms enough? If the latter is the case, it might be worth discussing with your doc a med called plavix which is stronger than aspirin (blood-thinning wise), but a lot milder than coumadin. Also one can take plavix with aspirin if needed. Now, if you've had a clotting incident then yes coumadin is probably needed as that is the standard treatment for APS patients that have clotted...


Hope you get to the bottom of this soon,

Zoi

 

[marbiegreen]

Well this is why I am asking questions. My doc is one of the best Rheums in Toronto, Canada. I have been with him for 23 years and trust him implicitly. I had a stroke about three years ago but it was vascular in nature, not due to a clot. At that time I was put on 325mg ASA and Plavix. Now with this new diagnosis, we talked about Plavix and ASA instead of Coumadin but he said that "coumadin followed a different path and was more beneficial". I have been reading up on it and one of the reports actually says "Asymptomatic individuals who are persistently positive for APL have a low annual incidence of acute thrombosis. These individuals do not benefit from low dose aspirin" Now, I have had a stoke (vascular), have ITP, and have white lesions in my brain which they talk about as a risk. Thats why I turned to this forum. I figured some people would have this dilema and tell me what they chose. If the risks between clotting and coumadin are almost identical, would you trust the ASA only? I have been reading about ASA and Chlorquine together but I have yet to speak to my doc about this. By the way, my sister is a doc and she is stumped also. Maybe I need to go see a hematologist! LOL

 

[Zoi]

Hi again,

Ok, now I'm really confused!!! :lol:

If I understand correctly, three years ago you had a stroke which the docs said was vascular in nature and not due to a clot. You didn't have an aps diagnosis yet then if I'm getting this right, but the docs put you on plavix and aspirin even though you say the stroke wasn't due to a clot. You can maybe see why I'm confused a little bit. Since plavix and aspirin are both blood thinning meds could the stroke you had three years ago have been from aps, especially in light of your recent aps diagnosis; and could that diagnosis be the reason your doc now wants you to switch to coumadin now?

To put it a bit differently, if your stroke had nothing to do with clotting then your being on anti-clotting meds like aspirin and plavix doesn't make much sense. If on the other hand your stroke was a clotting one and that's why you went on the aspirin and plavix in the first place and now the aps tests are coming up positive it does make sense that your doc would want to switch you to coumadin as you would fall in the category of the aps patients who have had a clotting event and they are generally treated with coumadin. Did the docs have a theory at the time about what caused your stroke? I don't really know about what kind of things can cut off blow flow long enough to cause damage other than clots and aps unfortunately, but maybe some sort of vasculitis can do the same?? Or was the thought that it was due to something unrelated and non-autoimmune in nature?

Now, as far as the risks between clotting and coumadin go it does sound like that is something you need to discuss in detail with your doc. It's very, very good that you trust your doc implicitly and that he's helped you for these past 23 years; it means that you can sit down with him and relay your fears and worries about coumadin to him and then make an informed decision about it!! :bigsmile:

Personally (I have aps too) I am coumadin resistant and thus have to take heparin instead; I did however try coumadin for a while and had talked about it with my doc. From what I understand, if one measures their INR regularly and keeps their diet relatively stable (i.e. no radical changes in say the amount of dark, green vegetables one consumes from one week to the next etc), coumadin can be a very safe med to take.

You say you have ITP and white lesions on your brain; do you also have lupus? If so, are you on plaquenil? Plaquenil, which is a great baseline med for lupus, also has slight blood thinning properties and can help a great deal in aps patients as well (Coumadin or no coumadin!!). That might also be something you may need to talk about with your doc!

The Hughes syndrome foundation in the UK has a wealth of information about aps and aps treatments and so does the antiphospholipid foundation of america: www.apsfa.org .

Re the report you talk about and the aspirin, do bear in mind when reading such reports on the net that there is a wealth of information out there and that different docs can have very different opinions on how to treat different disorders. APS specialists tend to give a baby aspirin (100 mg) a day and/or plavix to patients that have tested positive for aps on at least two different occasions six weeks apart, but that have had no clotting events and coumadin to aps patients who have had clotting events!

Re the hematologist; I don't know if a lot of people with aps from the forum see a hematologist, but generally aps specialists tend to be rheumatologists!! Is your doc a rheumatologist? If not, then maybe a rheumatologist specializing in aps would be helpful for a second opinion?

I do hope you get to the bottom of this soon!

Zoi

 

[Maia]

The aspirin route was chosen for me. I have not had a serious clotting event yet, but have positive ACL antibodies. I've only had thrombophlebitis in a couple of locations so my doctor's choice for me is aspirin only.

I also had some spots show up in a couple of brain MRI's, but my information is that these can be there in many people as they age... becomes more "normal" then (but not normal for someone in her 30's). They can be due to active SLE effecting the brain, or MS, or APS, etc.

It is interesting that you have ITP and yet have been on aspirin and Plavix - the ITP must be intermittent in nature and not a problem for you while on those therapies in the past.

For you... if you have NOT had a clotting event, then technically you don't have APS. I would choose, in your shoes, to not go on Coumadin/warfarin since you've had no clotting event and was unsymptomatic despite testing positve to ACL antibodies. I believe the study you cited is essentially saying no treatment is needed for people who test positive but have no history of blood clotting problems due to the low risk of thrombosis.

Obviously you do your research so I'm sure you'll reach a decision soon and will feel good about it!

 

[marbiegreen]

Hi again,

Ok, now I'm really confused!!! :lol:

If I understand correctly, three years ago you had a stroke which the docs said was vascular in nature and not due to a clot. You didn't have an aps diagnosis yet then if I'm getting this right, but the docs put you on plavix and aspirin even though you say the stroke wasn't due to a clot. You can maybe see why I'm confused a little bit. Since plavix and aspirin are both blood thinning meds could the stroke you had three years ago have been from aps, especially in light of your recent aps diagnosis; and could that diagnosis be the reason your doc now wants you to switch to coumadin now?

To put it a bit differently, if your stroke had nothing to do with clotting then your being on anti-clotting meds like aspirin and plavix doesn't make much sense. If on the other hand your stroke was a clotting one and that's why you went on the aspirin and plavix in the first place and now the aps tests are coming up positive it does make sense that your doc would want to switch you to coumadin as you would fall in the category of the aps patients who have had a clotting event and they are generally treated with coumadin. Did the docs have a theory at the time about what caused your stroke? I don't really know about what kind of things can cut off blow flow long enough to cause damage other than clots and aps unfortunately, but maybe some sort of vasculitis can do the same?? Or was the thought that it was due to something unrelated and non-autoimmune in nature?

Now, as far as the risks between clotting and coumadin go it does sound like that is something you need to discuss in detail with your doc. It's very, very good that you trust your doc implicitly and that he's helped you for these past 23 years; it means that you can sit down with him and relay your fears and worries about coumadin to him and then make an informed decision about it!! :bigsmile:

Personally (I have aps too) I am coumadin resistant and thus have to take heparin instead; I did however try coumadin for a while and had talked about it with my doc. From what I understand, if one measures their INR regularly and keeps their diet relatively stable (i.e. no radical changes in say the amount of dark, green vegetables one consumes from one week to the next etc), coumadin can be a very safe med to take.

You say you have ITP and white lesions on your brain; do you also have lupus? If so, are you on plaquenil? Plaquenil, which is a great baseline med for lupus, also has slight blood thinning properties and can help a great deal in aps patients as well (Coumadin or no coumadin!!). That might also be something you may need to talk about with your doc!

The Hughes syndrome foundation in the UK has a wealth of information about aps and aps treatments and so does the antiphospholipid foundation of america: www.apsfa.org .

Re the report you talk about and the aspirin, do bear in mind when reading such reports on the net that there is a wealth of information out there and that different docs can have very different opinions on how to treat different disorders. APS specialists tend to give a baby aspirin (100 mg) a day and/or plavix to patients that have tested positive for aps on at least two different occasions six weeks apart, but that have had no clotting events and coumadin to aps patients who have had clotting events!

Re the hematologist; I don't know if a lot of people with aps from the forum see a hematologist, but generally aps specialists tend to be rheumatologists!! Is your doc a rheumatologist? If not, then maybe a rheumatologist specializing in aps would be helpful for a second opinion?

I do hope you get to the bottom of this soon!

Zoi

Thanks for your help in this one Zoi! The stroke was due to vasculitis which does cut off blood flow. I had gangrene in my toes at the same time and one had to actually be amputated because it died due to lack of blod flow. I have had Lupus for 23 years. I was put on the ASA and Plavix to thin my blood because with vasculitis, you veins close up and thin blood gets through easier.

I have never been on Plaquinil. My first symptom of Lupus 23 years ago was catastrophic ITP which had me hospitalized for 6 months before they diagnosed Lupus and successfully treated the ITP. My Rheum says that, although it seems unlikely, ITP and APS usually go hand in hand even though they seem to be on the opposite sides of the spectrum.

I am hearing alot now that if you have had no actual clotting events that ASA should be significant.

I read about most people with aching joints and tired all the time and I must say that in all the years living with Systemic Lupus I have conquered that and my biggest worries is that my Lupus always attacks my internal organs and if I am not really carful, I could end up in hospital AGAIN!! Sometimes I don't even know if something is wrong with me until it is too late. When I had the bad vasculitis episode 3 years ago it all started with a cold thumb!! If I had not mentioned it to my sister (the doctor) at the time, I would probably be dead by now. How am I going to know if I have a clot?? That is the really scary thing. I am the one who always minimizes my symptoms and just barrels through with my life...
Thank you again for all your input, you have been most helpful

 

[marbiegreen]

The aspirin route was chosen for me. I have not had a serious clotting event yet, but have positive ACL antibodies. I've only had thrombophlebitis in a couple of locations so my doctor's choice for me is aspirin only.

I also had some spots show up in a couple of brain MRI's, but my information is that these can be there in many people as they age... becomes more "normal" then (but not normal for someone in her 30's). They can be due to active SLE effecting the brain, or MS, or APS, etc.

It is interesting that you have ITP and yet have been on aspirin and Plavix - the ITP must be intermittent in nature and not a problem for you while on those therapies in the past.

For you... if you have NOT had a clotting event, then technically you don't have APS. I would choose, in your shoes, to not go on Coumadin/warfarin since you've had no clotting event and was unsymptomatic despite testing positve to ACL antibodies. I believe the study you cited is essentially saying no treatment is needed for people who test positive but have no history of blood clotting problems due to the low risk of thrombosis.

Obviously you do your research so I'm sure you'll reach a decision soon and will feel good about it!

Thanks for your input Maia. I think after reading all of everyones advice and input, that the ASA route would do for me as well. You are the first person that I talked to that had the spots on their brain. I was 25 when they first started showing up and unfortunatly they are getting worse. They are not affecting me at all though, thank god!! The ITP was successfully treated and has not returned. I have NEVER been off Prednisone since initial diagnosis so I don't know if the ITP would come back if I came off the Prednisone!

Ah, so many different things we all have to deal with!!

 

[Clare.T]

Welcome to the forum


If you trust your doctor implicitly I am not sure of the usefulness of asking other people what was prescribed for them. A few people's personal experiences can't be balanced against the many years of clinical experience that a specialist has. We hope too that their own experience is backed by being up to date with international experience and studies. Other people's experience might be irrelevant to you because each case is slightly different; even if all the relevant info about each individual case was available we are incapable of advising on such a complicated issue when the decision is dependant on clinical evaluation of the individual involved.

Howver I appreciate fully that it is very comforting to know that other people have similar experiences and some understanding of the issues and difficulties

Doctors themselves have different therapeutic approaches and nobody has a crystal ball.

There's a point beyond which informing oneself as fully as possible becomes self defeating, whether it's getting a diagnosis or making treatment choices. It's easy to end up not knowing which way to turn, digging into an ever deeper hole of doubt.

The blood thinning quality of hydroxychloroquine ( Plaquenil) is slight so it is seen only as an adjunct to prophylaxis: Plaquenil alone or with aspirin is not used a therapy when there have already been incidents associated with antiphospholipids.

The formal criteria for a formal APS diagnosis are just like the formal criteria for a an SLE diagnosis. They are designed for statistics and to know who to include in studies.

Many people have abnormal levels of antiphospholid antibodies without ever suffering serious events from them. However there are many other related symptoms such as 'brain fog' that can be helped by Plaquenil and aspirin.
Chloroquine ( Aralen) isn't in general use these days but the majority of people with lupus are on Plaquenil as a basic treatment whatever other drugs they need.


I am puzzled too how the ITP, and the 'vascular' stroke fit into the current picture but that might be due simply to my ignorance. There are risks with long term Coumadin such as increased osteoporosis. It could be useful to know if the doctor now thinks the stroke was due to APS since that apparently is how it was treated then. Again, I don't know if vascular strokes aren't treated with blood thinners too. I know they are used for other sorts of strokes.

It is also of possible interest why the APS has only just been discovered.

Perhaps you could tell your doctor that you are finding it hard to make up your mind and discuss your misgivings with him and ask if he thinks a second opinion wouldn't be a good idea. Most good doctors would appreciate the situation and not feel threatened or take the request amiss. Anyway you will need your full case history for a second opinion.

Wishing you all the best

Perhaps your sister could come along with you.

You would need to find an APS specialist and not all hematologists are, just as rheumatologists are not usually lupus experts.

There are APS support forums where you might get further comments.

All the best

Clare

 

[marbiegreen]

Claire

Thank you so much for your input also!

I think you hit it right on the head when you say that I am digging myself deeper in a hole of doubt

This quest did teach me that not all APS patients ever have a problem.

The ITP and the Vascular stroke go together with the APS as a secondary risk factor. They sort of make the chance of the clots stronger.

When I saw my doc on Friday, we spoke for over an hour about it. He emailed me tons of information and told me to speak to my sister and let him know what I wanted to do. He is also on the fence! So is my sister! I have emailed him tons of questions (mainly spurred on by this forum!) so I am sure he will call me on Monday.

I usually never question what he tells me, but he was saying that the risks are almost identical so that is why we are both on the fence. My husband says that I will search until someone tells me not to go on Coumadin, then I will be happy. He knows me too well...

 

[Lily]

Hi there,

I'm a bit confused too :lol: but that doesn't take much these days

The stroke was due to vasculitis which does cut off blood flow. I had gangrene in my toes at the same time and one had to actually be amputated because it died due to lack of blod flow. I have had Lupus for 23 years. I was put on the ASA and Plavix to thin my blood because with vasculitis, you veins close up and thin blood gets through easier.

Brain Vasculitis can interrupt the blow flood to the brain and cause lesions from dead tissue starved of oxygen because of no blood flow. Whether that is why your lesions are there is something your doctor should know. If you hadn't had a prior MRI to the stroke then it would be difficult to tell how long they had been there and if the stroke caused them.

The interruption to blow flow in Vasculitis is caused by inflamed 'swollen' if you like veins, it is in this way a clot can form. Once the inflammation (i.e. Vasculitis) has been brought under control which can happen quite quickly with Pred and Immunosuppressants then usually there is no need for blood thinning meds. Of course there may have been profound damage from the Vasculitis and permanent narrowing neccessitating the need for blood thinners but usually that isn't necessary if something is caught in time.

I too am wondering if your doc now thinks it was not a case of Vasculitis at all, but more due to the APS you have now been diagnosed with? I wonder if you were tested for APS antibodies at the time of your stroke? One would think that would have happened but maybe it didn't.

It's useful to write down your queries and questions that have arisen since your last visit and go and see him again. Tell him you are still confused about your situation and finding it difficult to make a decision without further discussion.

We each have our own stories, intricacies and treatment because this is such an individual disease. Your doc should know your case best but it is still necessary for us to be comfortable and well informed about treatment options.

love
Lily (a vasculitis survivor)

 

[erenae1974]

I have been on coumadin for 3 years, it will be a lifelong thing for me. I do have APS & had a clot in my leg from knee to ankle, it was huge!! I've had several clots since, not nearly as large though. I had a hysterectomy & grew lots of clots in the incision, forcing it to split open 2 weeks after surgery. Also they put this filter thing in my vein so if I were ever to get a clot, it would stop it from going to my lungs. I really don't mind being on coumadin, I have no side effects, and is just part of my life. I stay between 2.5 to 3.5 on INR. The only issue I have with it is that I can't really drink. Sometimes it would be nice to sit with some wine or something, but it really messes up my blood, so I don't do it very often. I really don't bruise alot either, but I try to be careful. Just thought I'd share my experience with it. Good luck....