What is Pulmonary Embolism
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation an...
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Coumadin for life....
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Hi everyone!
I met with my new hematologist yesterday for my first follow-up. After reviewing my blood work...the whole 19 vials he ordered on our first meeting...he found that several of my levels were high but just mildly high. For example my B2 glycoprotein was 19. From what my husband and I put together is that I have a form of Antiphospholipid protein syndrome. I have to go see a pulmonologist as a second set of eyes to decide if I need coumadin for life. I am a bit freaked out. I already know that having another baby for me is going to be difficult and I know that I am blessed that I do have one happy and healthy 20 month old. I am concerned about being on coumadin for life....I feel so terrible since being on it. I am incredibly achy. I was having muscle and joint pain before the PE was discovered but it has gotten significantly worse since being on Coumadin...especially during "that time of the month". My hips and back are killing me. I feel like I am 90 years old and am in some constant level of pain. Little things like walking are at times excruciating. All the docs tell me to get active and lose weight to help myself out but it hurts to move. I am seeing a rheumatologist who is investigating lupus etc. I guess what I am looking for is for someone to give me their experiences of being on Coumadin long term...does it get better or easier???? Thanks a million! Posted on 07/01/09, 03:07 pm |
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Hi Paula,
I too have Antiphosholipid Antibody Syndrome as my root cause. THere is a group her but it is among the rare disease list according to the CDC and the page is occassionally busy. There is a group in UK where it is called Hughes Syndrome that has a lot of info about it and an organization in the US as well www.apsfa.org I have found my life significantly improved in quality with my long term Coumadin. It as been ten years now. I have decided to have an abaltion to decrease the issues of my menstrual cycle and Coumadin. But then again I have grandchildren and do not want more children. Gotta run on my way to work. 
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Paula,
Here is a patient brochure from a organization working with the U.S. Government (CDC) to raise awareness about blood clots and blood clot disorders. They are the largest non-profit patient organization in the U.S. representing these communities: http://www.stoptheclot.org/natt_pu...
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There are some patients who do better on the commercial version of the product than on the generic. If this is the case, you might request that you receive Coumadin instead and see if that makes a difference.
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Paula,
I noticed I didn't address the Coumadin issue. I was on Coumadin (therapeutic INR of 2.0 to 3.0) for six months in 1992, and then three years in 1995. From 1999 to late 2000 I was off Coumadin and had problems with superficial clots. In 2001 I took part in the PREVENT Trials which looked at low-intensity Warfarin/Coumadin treatment for long-term patients. This trial looked into whether a low target INR of 1.5 to 2.0 was beneficial for long-term patients while reducing some of the risks associated with the higher target INR. I've been on this program since 2001 and really have no complaints. I find coumadin/warfarin has not changed my quality of life. Like Bob has mentioned, some folks fair better on either Coumadin brand Warfarin or the generic. Both, in concept, should in therapy provide the same results but for what ever reason some folks do better on one then the other. For me, generic Warfarin drove my INR all over the place while Coumadin kept it consistent. Another patient may find the total opposite. There are other alternatives in the event that you just don't do well on Warfarin or Coumadin. ARIXTRA is one alternative as is Lovenox. However both these medications are really meant for short term treatment. Eith that said, there are patients who need to be on one of those medication because Coumadin did not work for them. You mention your hips and back are bothering you and this started before being on Coumadin. Has the Rhuematologist ruled out any hip problems? I had the same symptoms which progressively got worse over the past two years. The doctors thought it was siatic nerved, turned out I needed hip replacement. Not saying this is related to your problems but wanted to at least mention it.
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