Blood thinner Coumadin gets black box warning over fatal bleedi...

Hi Lynn,
Thank You for your information every little bit help's.
I have never had a heart problem, this Thrombosis came out of no where and thankfully I sought out a second opionion, otherwise I would never have had the full blood count and it would not have been found.
Everybody's post are really helping me, I guess it is the fear of the Unknown.
And Lynn Thank you for Thumb's up for beating Cancer, I am pretty proud of that too, but then this happen's and you wonder , will it ever end.
I am not really a relious person, more spritual and truly believe in Angel's.
Anything you can add, I just want you to know I am truly grateful!!
Casey, Rhode Island USA

Casey, I will say, if you are going on coumadin and you are severely anemic - you definately want to be checked frequently. I think as far as questions for your doctor, maybe I would state it more precisely as, informing your doctor :)

** You need to tell your doctor that YOU are aware of the complications involved with taking coumadin. Because of this, YOU want to know "what their procedure is in managing someone". Meaning, How often do they manage an INR - biweekly, weekly, etc? Will they contact you that day with your result, instructions for your dosage, and when to have your next blood test? Reason for this is: it will let you know if your are receiving "quality care", if they do not care for you exactly like that - you will not have them manage your coumadin. I cant tell you how many of my patients told me that prior to being managed by me, they were either discharged from the hospital on coumadin and never told they need to be "monitored" or "to have their INR checked routinely". I actually took over managing a gentlemen that had been on coumadin for over a year and NEVER had his INR checked - thank God he never had problems, although he had been running lower than his recommended range.

If your doctor tells you not to eat green vegetables, YOU tell your doctor, you are not changing your diet, he needs to manage your coumadin around your regular diet. The only time you need to change your diet is if you eat extreme amounts of vita k. If you eat a normal amount of vita k - your doctor should not have a problem regulating you.

Another thing, when you are started on coumadin, you make sure that whatever dose your doctor starts you on, he checks you after 3 days (prior to taking your 4th dose)-- this should give him an idea of how you are reacting to the coumadin. I used to give bolus doses for 3 days to see how my patients reacted-- it gave me a better idea how to adjust their dose. DO NOT allow them to have you take the dose for a week without checking you. Due to your anemia, I dont believe they would do that but just make sure.

Ask your doctor "who" will be making your dosage changes - if its a nurse, ask how long they have been doing it. If they tell you they use a protocol to adjust your coumadin, you will find you will be bouncing around. I NEVER used a protocol. Protocols should only be used in the case that you are unsure what adjustment to make. Let me share why, the protocol lumps everyone into the same category and adjusts everyone the same. If doctors thought about this, they would treat everyone with high blood pressure the same. You need to make sure they KNOW how to adjust your INR and coumadin without a protocol. If not, check around to see if there is a "coumadin clinic" in your area, they specialize in this.

Hope this helps, keep us informed.

Lynn wrote:

Hi Casey, I am 39 and I just started coumadin 8 days ago and I, too, have a pretty weak stomach and was nervous. Good news, though - I've had no stomach side effects. As a matter of fact I am convinced that any side effects I am having (mainly fatigue) is coming from the Lovenox (I'm assuming you will be on this in the beginning also).
I went off it for 3 doses and started feeling great - even went running. I confessed to the doc and he told me "BAD" idea, that when you first start coumadin you are actually at a HIGHER risk for clots then if you were not taking the coumadin at all....?!! I thought it was just to cover me until my INR got b/t 2-3. So I've been back on it for 4 doses and today I was exhausted, dizzy, and just crappy feeling! He says it's not the Lovenox, but I'm not convinced, I'm wondering if the coumadin plus the lovenox has any effect on BP or if these drugs can make you anemic or what? There must be some explanation.- My BP was only 94/56 today when I checked. I take BP meds for a heart condition, but I don't have high BP without them.
Anyone know if either coumadin or lovenox affect BP?
Casey if you look down a few posts, I posted some other side effects I'm experiencing that may be due to the coumadin - I think it's titled "Coumadin and joint pain?" Never got a response from anyone, so maybe that one is not so common.
I will also tell you on the positive side - I normally have been having tons of PVC's, skipped beats and just an irregular heart rhythmn and it has virtually stopped since I've been on this stuff. I'm not sure if it's b/c I'm taking it easy b/c I'm tired or if it is from the meds, I am going to ask my cardiologist next time I go.
Hope this helps and, by the way, a big huge thumbs up to you on beating cancer Casey!!! That's so good to hear!
Take care and keep us posted.

Lynn, you need to let your doctor know about your BP -- if you havent had high blood pressure, why are you on meds. If you are on BP meds for something else, you should still let her doctor know how low your BP is, you may need to have them adjust it.

Thank You Laurie,

Those are some good question's for me to ask, seeing I have absolutly no idea what to ask??
Thank You for taking the time to write to me.
Casey

Casey, No problem, make sure you write down everything they tell you and if you have questions dont be afraid to ask them. Also, if you still dont understand, feel free to give us a shout :)

laurie,
Thank You again, I am bringing my Mom with me,
she alway's has a Notebook with her and she can write down , everything I miss.

Sometime's , when I get nervous I forget to ask certain question's and then I remember then when I have already left, I hate that

Casey, your not the only one :) All my patients did that - they would see the doctor, spend 20 or so minutes in the room and come out and ask me what the rx the doctor gave them was for and what they were suppose to do :) Thats why I also recommend that you write down all your questions before hand and take it with you. Dont let them rush you, go thru your list, and take your time writing down the answers, and good idea taking Mom, Mom's are good at that :)

laurie,
I have been dealing with so many Medical problem's and my mom has alway's been there for me for that reason.
We alway's laugh and tell the Dr.'s , that she has her pad and she is not afraid to use it.
I am blessed that my Mom is my Best Friend.
When I got married 15yrs. ago, everybody was waiting to see who would be in it, but after being at so many , where there were really just too many people.
I decided to make my Mom my Matron of Honor and that was it on my side.
I know this is not on the subject, but for the people out there who come with us , I want you to know that even though we are nervous and may be a pain that day, we appreciate the fact that they come with us.
Your a great help laurie, Thank You!
Casey

I am one of those too that tends to forget to ask the doctor stuff...before I go into the office I have it all down in my head and I just know....but once I am in there I forget only to think about it again when I am almost back home....

I like it when my husband comes with me. He is an engineer and he has the most organized mind of anyone I know. It's always a great help.

I am so glad you still have your mother Casey. What a blessing.
Mine passed away, completely without warning, 2 years ago, just a couple of months after I had my PEs.....

as for blood pressure, mine runs low too, and I was on Lasix for several years - to control the swelling of my legs. Lasix' main function though is to lower blood pressure, something I really didn't need. Sometimes my BP would go to a ridiculous 85/60....so the doctor said for me to get off it and not worry about the leg swelling.

I gained 10 lbs water weight during the first week off the lasix - did'nt like that but I sure felt more awake and alert and energetic. I guess I just shouldn't pay so much attention to those numbers...:)

Great to have you on the forum Casey. And yes, Laurie, I have been reading your advice on every thread in this forum...thanks!

All the best,
Angela

Angela,
I am sorry to hear about your mom, I am 40 and my mom is 65, she was alway's the youngest parent in my class's. As was my Dad who is still with me , Thank God!!
I don't have low Blood pressure, I have normal, which amaze's my Dr. because everyone, including Cousin's have it. I tell him I am good at venting! HA!HA!
I was glad I found this forum, it help's me find out what to expect!
Just went to the Hospital to get my last blood test's and then the Dr. will see where we go from there.
Thank's for Listenng!
Casey

Just one thing i wanted to correct, I meant to say everyone in my family has High Blood Pressure!
So that is why my Dr. is amazed I don't.
Just wanted to clear my mistake up.
Casey

Everyone has great ideas and experiences to share and that is why this forum is like a little family. We all have something to bring to the table. I am not on Coumadin so I dont experience all of what each of you does- I just have experience in managing it. But I do enjoy the fellowship and what I consider a "bond" that we all share. I am proud to be a part of this and to be able to get to know each of you :)

Tamara wrote:

Today would have been my dad's 60th birthday. He passed away two weeks ago. He was taking coumadin for 2 years because his doctor insisted he needed it. My mom noticed a change in him almost right away. He was tired and weak and not motivated at all. His appetite changed and he just wasn't the same. He would go to the doctor as ordered to get the blood tests to check his coumadin levels. He would complain of being in pain or aching and the doctor would say he was fine.
This went on and he progressively started getting worse. My mom asked him to please stop taking the coumadin after she saw they were derived from an ingrediant in rat poison. How could this be something good for him?? But he trusted his doctor and refused to stop taking it or wean himself off of it.
3 weeks ago he noticed blood coming out his mouth and his rear. They went to the hospital only to find he was bleeding internally. They kept him overnight to give him plasma and vitamin K. He also was turning yellow but the dr never checked his blood for other problems, just his coumadin levels which were high (not from taking more medicine but from what the medicine was doing to his blood. They sent him home the next day with 3 prescriptions: anxiety pills, something for joint pain and something else for pain. This was to be taken in addition to the regular dose of coumadin. My mom fired his doctor because he was not helpful.
The next day he turned even more yellow and was reeling from pain in his lower back. They rushed my dad to the hospital and later did an MRI. He had numerous growths on his liver and was experiencing total organ failure. He died 2 days later at 59 years old.
I feel robbed. I know in my heart that the combination of neglegence from his doctor to inform my dad of all the risks associated with taking this drug and giving him other options (because there ARE other options, this drug is not a last resort - my dad had a slight irregular heartbeat and lived without this drug for several years) also this doctor did not monitor my dad properly or listen to him when he would tell this dr all his symptoms.
I have been reading so much about this drug and all I read are negative things from people taking it and positive things from the doctors who prescribe it. My dad died - how many more of our loved ones have to die unneccesary deaths before someone takes action to pull this drug off the market?
If anyone wants to do something about this please let's put our heads together. My email is: dawnlight1976@aol.com

You have my sympathy. My father died too. He was on Coumadin and while in the hospital and ready to go home they switched him to Warafin. Within 25-35 minutes he was down. He turned blue, began freezing, couldn't breath, became nauseous and more. I can't even descibe what I saw. He died six days later in pain unable to ever really breath even with the 100% oxygen. He was a couple day short of being released. Doctors think they know it all. They don't care about patients anymore. Just the almight dollar. People beware of blood thinners.
Bless you and your family.
Pam

Pam, I am sorry for your loss. What you describe sounds like he through a clot - warfarin would not have done that. I also am not sure why the hospital would have switched him to Warfarin - they normally dont carry generics on the floors or at least not where I worked. Did you fathers doctor give you any explanation for what happened? I do understand how devastating it is to see a family member be so vibrant one minute and then deteriorate so quickly. I wish I could offer you something to ease your pain but sometimes life just cant be enplained. My deepest sympathy.

Hello

Casey, I am wondering how you are doing and how your blood tests came out. What's next for you? glad to hear you have normal blood pressure. It's such a blessing.

Laurie, I do so appreciate your postings, esp. the one above from June 29th. I have read it a lot and it's some of the best advice I ever had.

I am so sorry for your loss, Tamara and Pam. There is really nothing I can tell you to ease the pain and I at least understand the pain and frustration you must be going through.

Please know that we are here to encourage you, pray for you and help however much we can through this forum.

Laurie is right, this is a nice little virtual family here where everybody is very encouraging and helpful.

God bless us all....

Hi Angela-San Jose,CA,

I am hoping to hear from my Dr. tomorrow! I will let you guy's know what is going on. After that I am suppose to be going on the Coumadin.
I really appreciate all of your concern's and help in learning about this blood-thinner and it's effect's on people , I know everyone is different , but I like to know just in case.
Thank You Again,
Casey
North Kingstown, RI

Hi Everyone,
Well I heard from my Dr. today and I am seeing him on Wensday, I have to be put on the coumadin.
By the tone of his voice, the last couple of Blood Test sealed the dea.
It is wierd, because my life is like ,
" Murphy's Law " on Thursday I get the pleasure of getting a Root Canal or I may lose the tooth, see the size of my mouth is so small for all their instrument's. Luckily I have received another great Dr. her name is Dr. Maura Reynold's and she is so caring.
I will let you know how Wensday goes!!
Thank You All Again for Listening!
Casey
North Kingstown, RI

Hi Everyone I hope you had a nice 4th. of July.
I saw my Dr. today and I will be going on the
Coumadin on Friday.
Because I had such a life threatening surgery last year, I had a Thrombosis which caused me to lose 1/2 of my colon and a part of my small instestine. It is amazing, with these blood clot's , on the day it happened. One minute I was on the phone laughing and 10-min. later I was in agony. And being rushed to the Hospital.
So after many Blood Test's , we both agreed this is the best way to go. My Dr. told me to tell my parent's and sibling's to take a simple blood test to find out if they may have it too, better to find out now, before they go through the hell I have been going through! I would not wish that Hospital stay and Major Surgery on anyone, trying to get your body back is not easy, especially since in order to save me, the Surgeon had to cut through my Ab's ( I have a long incision down my stomach) Now I am trying to get them strong again, and get rid of the 2-bump's I am left with because they are so weak now!
I will keep you up to date.
Thank You all for Caring, it is nice to be able to talk to people you don't even know, and they help you right away.
Thank You Again,
Casey,
North Kingstown, RI

Casey, keep us updated as you start your Coumadin and we will get you through it and safely :)

Lady Golfer wrote:

Well, I know there have been a lot of folks on this drug for many, many years. Having worked in the Health Care Business for a lot of years I have seen this medication on a lot of Medication List. Personally, I have been on Coumadin and/or warfarin for almost 2 years. I certainly am not an expert on this medication but I have researched it in length over the last 2 years and have read a lot of pros and cons about it. I have to say it probably kept me from losing my foot/leg. I have had unstable INR/PT levels over the last 2 years but I have dealt with that. I worry a lot about the consequences and adverse effects all the time but I still have my foot/leg. I have discussed this drug with my Medical Doctor, Hemotologist and Surgeon and they all say the same thing. It is the best known treatment for me. I asked if there was any other alternative to Coumadin/Warfarin and they all 3 told me the same thing. It is an old drug that has been successful in the treatment of blood clotting disorders. We hear a lot about the negative side of this medication but not a lot about the success. I am afraid and worry about taking the medication. I take 7.5 mg. daily. Statistically, the drug is a widely prescribed medication and other than the problem of keeping a stable INR/PT level it is supposed to have relatively few side effects. The benefits outway the risks for me. I still have my foot/leg and the coumadin/warfarin is working at this time in preventing any new clots and in the healing of the old clots. I don't know what the future may be but for now I have to rely on this medication. My suggestion to anyone taking this medication is to have a good Medical Doctor that is willing to monitor it closely and stay on top of the INR/PT levels. I am so sorry for the one's that have had bad experiences with this medication but I have to thank God that it obviously has worked for me atleast for now. I am a true case of Hypercoagulation State. No known cause of blood clots. I have tested negative to all of the blood disorders. Until there is a newer, safer drug available in the US Coumadin/Warfarin is the number one prescribed medication in the prevention and control of clotting disorders.
Sorry this post was so long but I had a lot to say. This Forum has been a daily part of my life and I read all the topics. It is a comfort and support system to me having a place to share my story and hear others experiences.

US coumadin/warfarn is the number one prescribed medication in the prevention and control of clotting disorders because there are no other choices for most clotting disorders other than heperin shots.

I am happy that you are doing well while on this medication. Please note however that even though a patient is monitored closely there is still danger with taking this drug. There is a percentage of people that are super sensitive to coumadin, or who have a rapidly fluctuating INR. My father almost bled to death not once but twice in one month and is not suffering long term effects from these hemorraging incidents. 8 thousand people a year bleed to death because of coumadin/warfarin.