My second run in with a blood clot resulted in passing out on my ...

I had a massive PE 2.5 years ago and I have been on Warfarin ever since because they did not know the cause, and the PE was so large that it is too great a risk to stop the blood thinner. About six months ago the 3rd hematologist I have seen diagnosed protein C and S deficiency so now I will have to remain on Warfarin for the rest of my life for sure.

Before Warfarin I went to the gym several times a week and was physically active. Now I can barely get through the day due to such severe joint pain which I just now figured out is from bleeding in my joints. I use crutches in the evenings and mornings also have kidney pain. After going off Warfarin for a month due to a breast biopsy, I realized it was the Warfarin that is causing my pain (and mental confusion). I thought I was dieing I was in such pain! It is the Warfarin that is slowly killing me! As soon as my INR was corrected the pain was gone like magic. The difference was so dramatic that my hematologist even looked into keeping me on Lovenox to replace the Warfarin, but for several reasons that is not an option. So now my internist has me back on the Warfarin and I am in so much pain that I keep looking for a solution.

Three weeks ago I got my own InRatio blood monitor and I think I have had a breakthrough. My internist says I have to keep my INR between 2.0 and 3.0 for the drug to be therapeutic. He keeps my dosage at 5mg five days a week and 7.5mg two days a week. My INR is usually close to 3.0 but since I have the monitor and can check my numbers every week now, having a lower INR is not as risky as when I only had it checked every 4 weeks at the Dr office. It is safer for them to keep my INR high because a lot can happen in between getting my blood checked and they are more concerned about me forming blood clots than they are about pain in my joints. I am trying to complain about the side effects more so they know I am not someone they can just medicate and forget about. On Friday morning my INR went down to 2.6. I had a painful day but not as painful as earlier in the week. Normally I take 7.5 mg of Warfarin on Friday and Monday evenings and 5 mg the rest of the week. If I had taken the 7.5 mg the INR would have gone back up to around 3.0 on Saturday. Instead, I only took 5 mg last night and like magic I feel really great today. Very little pain. The difference is night and day. I’ll take the 7.5 mg dosage on Monday and test my INR again on Friday and hopefully it will be above 2.0.

I think the intense pain I have been feeling the past 2.5 years has been from bleeding in my joints. I never would have figured this out if I hadn’t gone off Warfarin for a month and discovered the pain stopped as soon as the drug stopped. An INR of 3.0 long term is just too high for me to tolerate. Now with the machine at home I can test weekly and locate the perfect dosage by keeping a pain diary and keeping my INR between 2.0 and 2.5 instead of 3.0 Hopefully my theory will pan out. I always wondered why there were good days and bad days, now I know what has been driving them. I’m sure my internist does not want me to self medicate, but he is too busy and unconcerned with the side effects. Plus it is rare for a patient to remain on Warfarin for longer than 12 months. I don’t think they know or care what damage it can do. As long as I don't get another PE they think this drug therapy is a success. When will an alternative drug come out?? I am only 47 years old and feel like 87. This is no way to live.

Hello
I am an active (or I was active) 47 year old female who suffered a very bad horse injury and a month later had dvt in my entire left leg from groin to ankle. I'm also very glad to be alive but it sucks to be tired and inactive, with my hair falling out and my calves hurting all the time. Also, I'm having weight gain problems which I've never had a problem with. I've only been on this medication for 2 months and my levels are never stable for any length of time.
What does a person do when you complain about side effects and I'm told it can't be from the Warfarin.

Hang in there Yiter. Your PT/INR will stabilize eventually. It has been 3 years that I have taken Warfarin and my levels are very stable now. My diet doesn't really even effect it any more. Only new medications seem to have an impact. If you are going to be on it life long like me, get a monitor. It is really worth it. I complain about the side effects and my doctor just says "what do you want me to do about that, you have to be on this medication."
I get a massage once a month, go to my chiropractor twice a month who also gives me cold laser treatments in my aching joints and even tried hypnotherapy for the pain. I also started a really healthy organic diet. I am feeling so much better from 6 months ago. Make pain relief your #1 priority and you will find solutions. Pain relief drugs can't really help you when you are on Warfarin. Look into alternative medicine.