PE with APS

[Sazew]

Hello everyone .. Does anyone experince PE with aps infect maintaing INR b/w range of 3.5 to 4 .. Here i m unable to get wise advise ... How to control clots etc ...

[Lure2]

Hi,

I wonder if you do not take Rutiximab anymore. You said you did earlier. I personally have not heard of this anticoagulation drug  but you talk about INR...... are you now on Warfarin?

 In that case I wonder how often you cheque the INR-value as it can go up and down very fast so perhaps you had a sudden drop when you had that PE. 

 I know members on this site who have clotted  or had PEs on an INR of 3.2 and even higher.

Best wishes from Kerstin in Stockholm

[Sazew in reply to Lure2]

I checked weekly infact most of the time i maintained 3.2 to 4 ... In oct i took rutiximab too

[Lure2]

 Hi again,

Those INR-values sounds good. That is wonderful. Hope you can remain on that value.  So you also take another anticoagulation drug?

 As I am not medical trained only have APS myself, I cannot comment on that. I know nothing of Rubiximab but I just hope you have an APS-Specialist who knows APS and how to treat you.

Please take contact with your Dr if you have had an PE or something. We know our own body when something is wrong. I know your are from Pakistan.

Kerstin

[Hidden in reply to Lure2]

Rutuximab is a is chemo drug that completely destroys the immune system and effectively eliminates all of the APS antibodies. They give this to some APS patients every four months to eliminate all of the APS antibodies. This drug is 100 percent effective in saving the lives of those who have Catastrophic APS. I know of one other person who has to take this when their APS symptoms act up. Their normal Anti-Beta 2 Glycoprotein antibody levels go over 1000, and this person continues to have blood clots, even with a very high INR. If you continue to have clots while on Warfarin/Fragmin/Heparin Etc, this is the only drug that can stop the immune system from going haywire. Technically we could all go off of our blood thinners if we used this drug. The only problem with that is we would be vulnerable to many different illnesses as we would not have a functioning immune system. We would be like HIV patients where a common cold or flu could kill us. The benefit does not outweigh the cost unless you are having a Catastrophic Attack. Most doctors and ER's do not know about this treatment. I will have this printed on a medical alert bracelet eventually. The current treatment of plasma exchange and blood thinners is not sufficient. That is why fifty percent of patients with Catastrophic APS have an unfavorable outcome.

[Sazew in reply to Hidden]

Thanks a lot 

[Lure2 in reply to Hidden]

Thank you! I did not know that but very interesting to learn.

Kerstin

[Hidden]

Also, you can clot while you're on blood thinners. This usually happens when your INR dips too low in between testing at the clinic. Even if your INR is in normal range and you have a new blood clot, chances are it formed while your INR level was sub-therapeutic. Some people do have clots on Warfarin no matter how high their INR's are. Those individuals are usually switched to Heparin/Fragmin. Some patients do better on Xarelto than they do Warfarin. Every patient is different according to my Hematologist. If you suspect you're having a new clot, go to the emergency room. That is the safest thing to do. I hope this helps!

[dutchess]

Hi, I had multiple p.e, I have APS and lupus, you have to keep your inr within range. Touch wood I been clot free for 8 years, x

[Lure2 in reply to dutchess]

Hi dutchess,

Keep on that way. Well done! I totally agree with you.

Best wishes from Kerstin in Stockholm