Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Warfarin causes calcification of veins arteries and vavles. It is poison to the body. We need k1 and k2. There are other ways to reduce coagulation.
Yes we all agree that warfarin is an very ugly drug, for all the reasons that David and others have brought up. Many of us have been on this site for more then two years and have done our own research as anticoagulant users and DVT/PE suffers, like you say the side effects that we, as users, know of and the list that is put together by the medical community is all entirely different.
Think about it, who normally gets blood clots, according to the medical community? Elderly, so they have brain fog, always tired, lose their hair,reeks havoc on their emotions and ... But all of these side effects are happening not due to warfarin but due to the fact that they are elderly folks...
Right?
Wrong, I have had this same discussion with my hemotologist team that are part of a research team well known throughout the world in the field of THROMBOSIS.
(some folks may have read this before, sorry to bore you with it but obviously it needs to said AGAIN.)
I can bring to you members of this community here that have been dealing at various level of DVT or PE and they are young. Take Jassmin for example, I think she is the youngest member of this community,she is 15 and has been dealing with it since the age of 7 and she has many of the same side effects you (David) have been complaining about. So that disprove the age reason for having THOSE side effects of warfarin...
BUT, as many have told you, many of the new drugs have to go through a certain cycle to find out if they are safe enough to be used by patients.
The LEGAL process is that the drug HAS to go through three phases which will test various level of effectiveness and safety.These drug studies are there to make sure that the new intended drugs are not going to be harmful to the users.
Dabigatran has gone through the three phases and the scientificts data is being studied by the FDA.
I was on Dabigatran for the third phase of the study, yes it has it's advantages, BUT it has a major problem, it has no antidote and that is why I opted OFF the study, 8 months before I was suppose to.
To me, Dabigatran SHOULD NOT be use by any of us before it has an antidote. That, outweighs the advantage it has over warfarin.
Here is a little scenario to help people understand...
You are on Dabigatran, you are involved in a traffic accident and you are bleeding HEAVILY, you need interventive surgery and the Dr. cannot give you anything to reverse the effect of Dabigatran, (unlike with warfarin, they give you vitamin K in large quantity to fully reverse the effect of the anticoagulant) what is the surgeon to do?
David, can you answer this question?
So the whole process(three phase of drug study and study by the FDA) has to exist and no DABIGATRAN can't be prescribe before it is approved and THAT IS THE LAW.
So you can forget about making noise about the new drugs, they will hit the market when it is deemed safe, NOT BEFORE.
Until then, it's warfarin or whatever your choice is.
A it has been mentioned, lets all please work together to help each others, not to add to the already existing FRIGHT LEVEL of having a DVT or a PE.
Let's all think of the way we were right after we discovered we had a clot...
I was 34 weeks pregnant when I had my DVT. I was in the hospital for a week and my four year old had to go live at a friends house for a week because it was too much for my husband with work, etc. He was overwhelmed. It was a horrific experience and I never want to repeat it.
After, my hospitalization a week later I was still pregnant and waiting till I could deliver the baby. I called up my OB and said I was still experiencing shortness of breath. She said she wanted me to do a CAT SCAN on me!!!!!!! I asked if there were any other options and I got a D-Dimer test.
When I got to the hospital, right away they wanted to do a CAT SCAN on me pregnant. I said I just wanted the D-Dimer test and a second opinion. I called up the original hematologist from my first stay in the hospital where he told the nurses and doctors who were pressuring me to have a cat scan that TREATMENT IS THE SAME WHETHER I HAVE A PE OR NOT!!!!
I am so happy I questioned the doctors. I am not saying they were trying to harm me on purpose but rather they did not have the same level of experience as the hematologist.
Pam
"Too many people I hear about have multiple system failures and die. I read about alot of people who suffered on this drug only to meet their doom which the FDA and drug co and drs would have you believe it was from the DVT or PE."
Really David? Where did you find this info?
"I keep coming across fatal prices I'm sorry but I seem to read alot about people that lost loved ones "mysteriosly" during warfain treatment."
What are you reading David? Why can't I find these stories? Oh, that's right. Pharmeceutical cover-up. FDA cover-up. They all want us dead, I forgot. But somehow, YOU'VE managed to find the truth, and have come out of the blue to enlighten us all. Never mind that most people take warfarin for a short period of time for DVT/PE unless they have underlying conditions. You should go to the Atrial Fib support group, or heart valve group - you'll find more people there who are warfarin lifers, and would probably enjoy hearing your stories too.
The multiorgan system stuff could be associated with the underlying syndromes people had i.e. antiphospholipid snydrome was one I read about. This does not mean it happens to everyone...
Regarding how Coumadin affects Liver and Kidneys my doctor is a big believer in blood tests and I can speak from my experience that my Liver and Kidneys are similar to pre coumadin levels. I save copies of my blood tests so I can compare... I wonder if Coumadin is helping my kidneys as clotting in the renal veins can adversely affect them too...
I agree I got a litle upset, however, the more I get involved with doctors and the more I read the more I realize that insurance companies, pharmaceutical companies and fear of malpractice are controlling our health care.
Maybe, this board should have a folder where people can post scary stuff they find on the internet and other people can respond with another perspective. It is good you posted this stuff instead of silently wondering about the calcification of the veins and arteries. When I read the article myself I said I will just make sure I get adequate Vitamin k and ask about any tests to make sure. I never would have thought to do that without your post.
Pam
Nobody has to stop eating their greens while being on warfarin,see you go on a rampage without knowing your facts.
While on warfarin, you continue eating your greens(highest in vitamin K content, broccoli, spinach, cauliflower) you have to be CONSISTENT with those, day in day out. Otherwise it's not only vitK that you deprive your system of but iron and a multitude of vitamins, YOU need your greens. Ask any medical dietician... Your medical team caring for your INR are able to level your dosage accordingly. If they are not, you need to find another crew.
Yes you are correct, DVT/PE is serious and we have to think accordingly, but worrying about something that should not happen just worstens you state of mind and you get tired,which DO NOT help. Believe me,we've been there...
Warfarin is an ugly drug,we all agree, BUT at this time and age, we don't have much of a choice, David you seem to avoid the questions that manyof us are asking you...