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Rene S.

Anyone With Coumadin Experiences?

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Hi. As many of you know, I've had a major saga over the past two months. I'm presently being treated for a blood clot with Coumadin. It's week 3 and each day becomes progressively worse with side effects. For starters, bone chilling coldness, dizziness, headaches, light headedness, extreme fatigue (just what I need on top of what I've got!!), depression/anxiety, hairloss shortness of breath, muscle aches/spasms and heartburn. Another weird factor - not sure if it's related to the drug, but since my angiogram my b/p has been falling. Especially my diastolic. And my h/r which was always high at rest is now about 65 which I guess is normal. Then why do I feel so awful? My average b/p is 90/55. Not fun.

I've spoken to the woman who runs the coumadin clinic in the drs office and she said that the only side effect of coumadin is bleeding.Ha! Did research and found that not to be true. Also have been having nausea, cognitive problems and other things that I'm sure I'm forgetting.

The dr is nice and did speak with him yesterday but he was bascially telling me to deal with it and push through it. I actually told him (in a nice way) to take the drug for a week and let me know how he feels.

I was on aspirin therapy for 10 years as a precaution due to the horrible heart history in my family. They simply cold turkeyed me off of it which I was afraid of a rebound effect. Something about it thickening your blood? I know, doing too much research!

Has anyone had to deal with coumadin and experienced any strange side effects?

I do have a nurse that comes to the house as well as a tech to draw the blood thankfully since it's impossible right now for me to get out.

Any insight would be helpful. I did look at alternatives, which would be Arixtra but for 10 shots it would be $1,600 and that's for 10 days!!!

Thanks so much for listening.

Rene

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I haven't taken it personally, but I have a relative that has been on it for about a year. She is cold all the time, bruises easily, dementia, heart arrythmias, hair loss, problems swallowing. I don't know if they are all side effects from coumadin but she didn't have these problems until she started it. One of her dr said he would not take Coumadin or give it to his family,so that alerts me to how bad it is. I've heard Coumadin is the same as rat poison but don't know for sure.

I know several people on Plavix (I think that's correct) for blood clots & they have had no side effects that they are aware of.

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Hi Alicia,

Thank you for your response. The drug is awful. I'm sorry for your friend. My former PCP told me that I am the poster child for coumadin side effects. She is wonderful but moved out of state. I've never felt so poorly. Exhaustion, body aches (worsening of fibro symptoms, headaches, heartburn, freezing all the time and the worst anxiety and depression I've ever had.

I wish I could use plavix but it's not indicated for a blood clot in the leg or lungs. And yes, it is made of rat poison. I would do anything to get off of this drug. I fear that it's making me so much sicker and non functional.

Thank you for sharing.

Rene

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I wonder why Plavix doesn't work for leg or lungs. One person I know took it for a blood clot in an artery in the heart. You would think if it would work for that it would work for anything. I do hope you get to come off coumadin soon.

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Hi Rene! I have been waiting for my account to get activated to reply to your message. I am newly diagnosed for POTS, sort of. One EP did the tilt table test and said I tested positive. He referred me to another EP who isn't so sure. I definitely have a hard time standing up for even small periods of time and my heart rate increases. Still waiting for the 24 hour urine test and blood test to confirm. I am also on a thirty day monitor because I am waking up to nighttime tachycardia. My story is a little weird and must be told to get to your questions.

I started having SVT attacks in November. I was told they were the AVN-RT type. I had them weekly for a month. My heart rate would get up to 250 and wouldn't come down unless I went to the hospital for adenosine. Saw an EP who suggested lifetime medicine or an ablation which was supposed to be a quick easy fix. I chose to get an ablation. The EP wasn't confident he got rid of what he needed but said tie will tell. Three days later, I went to the gym to work out. Felt funny afterwards, went to hospital and found out I had a small pulmonary embolism. I probably got it from the procedure. That hospital was a difficult one for me. I started being sensitive to everything: benadryl, iodine, morphine. Also, during my visit, I had another SVT attack in my sleep which confirmed the ablation didn't work. My EP put me on Flecanaide. I was also put on coumadin (warfarin). I don't know why but I felt like crap afterwards. I thought it was the flecanaide so I wanted off of it and had another ablation a month later. Almost three months later, still felt like crap. I looked up the side effects for warfarin and it seemed like I had almost every side effect. I still have to take it for another two months so I am hoping that it will give me some relief. I think that is why the one doctor is hesitant to label me POTS because he think I need more time to get off of the blood thinners and allow my body to heal.

So I have had similar experience as you but right now I am so confused as to what is what and why. I am trying to accept that I just don't know and may not for awhile. I will post again about this subject in July when I am off this dirty drug.

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Hi Rene! I have been waiting for my account to get activated to reply to your message. I am newly diagnosed for POTS, sort of. One EP did the tilt table test and said I tested positive. He referred me to another EP who isn't so sure. I definitely have a hard time standing up for even small periods of time and my heart rate increases. Still waiting for the 24 hour urine test and blood test to confirm. I am also on a thirty day monitor because I am waking up to nighttime tachycardia. My story is a little weird and must be told to get to your questions.

I started having SVT attacks in November. I was told they were the AVN-RT type. I had them weekly for a month. My heart rate would get up to 250 and wouldn't come down unless I went to the hospital for adenosine. Saw an EP who suggested lifetime medicine or an ablation which was supposed to be a quick easy fix. I chose to get an ablation. The EP wasn't confident he got rid of what he needed but said tie will tell. Three days later, I went to the gym to work out. Felt funny afterwards, went to hospital and found out I had a small pulmonary embolism. I probably got it from the procedure. That hospital was a difficult one for me. I started being sensitive to everything: benadryl, iodine, morphine. Also, during my visit, I had another SVT attack in my sleep which confirmed the ablation didn't work. My EP put me on Flecanaide. I was also put on coumadin (warfarin). I don't know why but I felt like crap afterwards. I thought it was the flecanaide so I wanted off of it and had another ablation a month later. Almost three months later, still felt like crap. I looked up the side effects for warfarin and it seemed like I had almost every side effect. I still have to take it for another two months so I am hoping that it will give me some relief. I think that is why the one doctor is hesitant to label me POTS because he think I need more time to get off of the blood thinners and allow my body to heal.

So I have had similar experience as you but right now I am so confused as to what is what and why. I am trying to accept that I just don't know and may not for awhile. I will post again about this subject in July when I am off this dirty drug.

I am so sorry for all that you have been through. You and I should be finishing the coumadin at the same time. I've never felt so awful in my life. The side effects are unreal. I'm tired of being told that bleeding is THE ONLY SIDE EFFECT! It's totally untrue. I have muscle spasms so bad that they wake me up. I'm so anxious and depressed that even klonopin doesn't touch it. I have zero energy and feel as if I weigh 500lbs just dragging myself around. We literally are ingesting poison.

I too got my blood clot as a result of a procedure. Horrible. Please PM me and I'll give you my email address. We can commiserate together.

I hope your symptoms abate, but I'm finding mine are getting worse with each passing day.

All my best,

Rene

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Commiserations to both of you stuck on Warfarin (Coumadin). I know lots of people taking or who have taken Warfarin but I didn't know about the side effects you are both having.

Aspirin and Clopidogrel (Plavix) both work by reducing the "stickyness" of the platelets in the blood. When a blood clot forms fibrin makes like a spiders web or scaffold and the platelets stick to it to make the clot. Both aspirin and plavix are used for people with coronary heart disease to reduce the chance of heart attack.

Warfarin (Coumadin) works differently as it alters the clotting cascade in the blood effectively meaning that the blood clots very slowly. This is important if you have a DVT or PE where the natural course would be for the clot to keep getting bigger without treatment. In most cases aspirin or plavix would not be powerful enough for these big blood clots.

Yes Warfarin is used as rat poison. This is because a large overdose of warfarin will cause you to bleed to death, essentially the rats are given an intentional overdose that would lead to bleeing in the brain. To prevent this happening in people you have to gave frequent blood tests to make sure you are on the right dose.

There is a new drug to replace warfarin coming out soon but the last new drug lead to about 3500 deaths from liver failure before it was taken off the market.

Flop

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