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Lady Golfer
Glasgow, KY
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OK, here's a new one for everyone on this discussion forum. Today, My primary MD called and wants to STOP my Coumadin and start me on Aspirin. She consulted with my Surgeon and they agree that at this time I should take Aspirin with the Pletal and go get an ASPIRIN RESISTANCE TEST. I was told almost 2 years ago that I would be on Coumadin the rest of my life and that I was high risk for blood clots and amputation of my right lower leg. WHOOAAA... Friday afternoon news and worried about the possible outcome of this change. Anyone have any thoughts on this one? Anyone know anything about this new ASPIRIN RESISTANCE TEST?
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Angela
Fremont, CA
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Seems to me it's time for a second opinion? I would want to know why they are doing this, after being so strong about having you on coumadin for life. At a minimum, I would ask for an explanation, so you understand why they are doing it. Knowing why helps a lot. Also, if you don't feel good about what they are doing even after they explain, then go for a second opinion.
I have personally not heard about an aspirin resistance test....
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Lady Golfer
Glasgow, KY
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Hi Angela. I read that this test is fairly new. Approved by FDA in May, if I remember right. It's a urine test to see if the aspirin is working. If you read what the aspirin is suppose to do then the test will tell whether or not you are resistant to it's effects. There's about 25% of people that can't use the aspirin for the blood thinning. They have to use other drugs such as Coumadin. From what I understand it tells whether your platelets are sticky and prone to clotting. I searched under Aspirin Resistance Test and found a lot of information. My friend is an RN in Endoscopy. She said one of the Surgeons here locally has been ordering this test on a lot of his patients that take aspirin and are scheduled a surgical procedure or endoscopy, etc. Well, my MD and Surgeon agree I should do the aspirin thing. I will not stop the coumadin until I talk with Hemotologist on Monday. Surgeon thinks I'm healing and results of Ultrasound on June 10 was good. Numbers showed good blood flow. Scary thoughts all night. I don't understand the change in prognosis. Can the aspirin actually thin the blood similar to the Coumadin? I had total occlusion of one artery in leg and major blockages in other two (about 70-80%) in September 2006. Almost lost leg. I have a lot of collateral circulation. Surgeon told me at that time a lot of the blockages (clots) were old thrombi. How do they dissolve or clear up. I'm afraid if I stop Coumadin I'll be back where I was in 2006 and possibly lose circulation again. I still can't hardly feel pulse in foot with fingers and I just don't understand all this. How do you go from having occluded arteries to having open arteries?
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Angela
Fremont, CA
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Hi Lady golfer, what did your hematologist say? Are you off the coumadin and on to the aspirin?
I guess every doctor is different in how they manage patients. Mine tends to be very careful and is definitely not a risk taker and I appreciate it. He told me that in his experience 75% of all people that had a PE once will end up having more, and usually the second time around it's a lot more serious.
So he wants me on coumadin for life. I am done arguing with him, lol....I used to give him a hard time but I am ok with it now.
He also suggests to avoid any and all dangerous activities while on coumadin - doesn't even want me on a bike, says it's just not worth it if you fall and bump your head.
I would also be very very cautious in getting off the coumadin. Please make sure your doctor explains it to you in understandable terms and you need to also feel comfortable with their decision.
My doctor - even though I 'only' had PEs - does not want me off the coumadin and on the aspirin - if anything, the aspirin would be in addition to it, not instead.
Please do yourself a favor and have the doctor talk to you and explain it to you. He should have no problems doing that.
Good luck - let us know how you are doing!
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Laurie
Indianapolis, IN
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Lady Golfer- I have never heard of that test - I tried looking it up on every site I know and I cant find anything about it. I even searched it on the FDA site and couldnt find it. Sorry, I cant add anything :)
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Lady Golfer
Glasgow, KY
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Thank you for replying. Last night I did not take my usual dose of 7.5 Coumadin. I took a 325 mg. Aspirin. I picked up my orders this morning for my Aspirin Resistance Test. Went to lab and they said they didn't do it there that I would have to go to the hospital to have the test done. The guy at the lab said they got the test kits but when they didn't get any orders from the doctors they sent it back. He said I would need to be on the aspirin for a few days before having the test done and I would still be in te safe window if I had to go back on the Coumadin. I questioned this in detail this morning. Apparently the test will tell whether or not the Aspirin is going to work for me instead of the Coumadin. I have been scared about this all weekend but I have a Primary Physician, a Surgeon, a friend that is a Nurse Practioner and a friend that is an RN and they all agree there's a possibility that the Aspirin along with the Pletal will work for me and a lot safer than the Coumadin. I will go to the hospital in the morning to have this test done and if it doesn't satisfy my MD she will resume the Coumadin before it is a problem. I asked her about the risks of clotting and she said that in most cases the Aspirin works. My Surgeon said my last Ultrasound showed good blood flow and he thinks I have healed enough and have enough collateral circulation to atleast attempt the Aspirin Therapy due to my age. I am scared but I guess I should have faith that surely knowing what I went through and almost losing my leg they wouldn't take too much of a gamble, right? Keep me in your thoughts and prayers that this will be successful for me. I'll let you know the results of the Aspirin Resistance Test.
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Lady Golfer
Glasgow, KY
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Laurie, try just putting in Aspirin Resistance Test. Several sites come up. Interesting reading.
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Lady Golfer
Glasgow, KY
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AspirinWorks is another site.
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Laurie
Indianapolis, IN
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Thx and good luck Lady Golfer- we will pray for you
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Angela
Fremont, CA
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I checked out some of the sites and indeed did find the test. Seems like 25% of the population is restistant to aspirin....
If the aspirin works for you - great! I would just monitor myself, how I feel and not ignore any symptoms. I am sure that after all this time you know your body pretty well and can tell when something's not right...just be careful.
Good luck and please let us know how it went!
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Lady Golfer
Glasgow, KY
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Today I got results back from my Aspirin Resistance Test. My MD doubled my dose of Aspirin from 325 mg. per day to 650 mg. per day. The normal range is 350-549. I was 476. Nurse said I needed to re-check in 2 weeks. I assume doubling the dose will help with the platelet thing. I am in the reference range but with the clotting and platelet problem she said I needed to be higher. Scarry, huh?
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Angela
Fremont, CA
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Hi Lady golfer,
I hope this all works out to your benefit. This is all very new to me and so I am interested in how this works out for you - I pray it's going to go well for you.
And yes, I hear ya, this does sound scary. Is taking this much aspirin safe? Do you need to take anything for your stomach?
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Lady Golfer
Glasgow, KY
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I don't know what's going on. A friend of mine is a Nurse at the hospital and she said that the Aspirin was probably safer than the Coumadin. There are risks with both medications. She said a lot of the Surgeons order this test for people that take Aspirin. She said that the MD is probably trying to bump up the Aspirin to get it to the level for anti-clotting and then she may back the dose back down. I had only 3 doses before I got the test so maybe I hadn't taken enough to get it up to a therapeutic level. She said it is a lot like the Coumadin and the INR/PT testing. It will tell the MD how much Aspirin I will need to keep the platelets from clumping and clotting together. She told me to take the coated Aspirins. I guess I should also take with food. If this works, it will be better for me. Keep me in your prayers. I'm a little paranoid about it right now. I don't see how you can be on any medication for almost 2 years and quit cold turkey. You would think your body would react somehow. We'll see how this works for now but if any out of the ordinary symptoms or signs come up, I'm gonna call them. I'll keep you posted. THANKS for replying.
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Laurie
Indianapolis, IN
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Lady Golfer - I certainly will keep you in prayer. It bothers me about the aspirin though, I would like to know how much you would have to take. ASA can be very serious if you take too much over a long period of time. It isnt really safe in my opinion especially if you have to take more that 325mg a day. But, I dont really know enough about what your doctors know to make a "valid" or "reasonable" statement. I have just seen problems with people taking too much ASA in the past.
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Lady Golfer
Glasgow, KY
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Laurie, I've heard the same comments a lot over the last couple of days. That's what scares me. I know I'm a difficult case for the MD's and some of the decisions may be judgement calls. I know 2 years ago I had a "severely diseased leg", occluded arteries, very litle circulation at all in right foot and leg, poor prognosis for amputation and no cause and factor for why this had happened to a 41 year old. Now, after regulating my INR/PT level for 6 weeks or so the MD's start changing my plan of care. Could it be something to do with my Insurance? I have been at the MD office almost every week and Surgeon every 3 months, been on a lot of medications, maybe they are tired of paying or maybe that is protocol to try to get a person off anti-clotting medications. I would hope that MD has plan of eventually tapering the dose of Aspirin. I guess I am at risks either way. Thanks for keeping me in your prayers.
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Laurie
Indianapolis, IN
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Lady Golfer - it could be that it is because you are a unique case but it very well could be the insurance. Its a shame that insurance companies wont pay for specialist to spend the time with patients investigating like they should. I would hope that some day - "patients" would be the priority and get the care they pay for.
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Angela
Fremont, CA
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This whole thing would concern me and I admit, worry me too. I don't want to scare anyone of course, but I would want to ask the doctor a LOT of questions, such as, point blank, about the insurance.
I have found the more open I am with my doctor, the more open he is with me. Maybe it's just him personally, but he knows I don't just accept answers.
Good luck, Lady Golfer, you are definitely in our prayers...
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Lady Golfer
Glasgow, KY
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Other than the coated Aspirin, what else could I do to help decrease the potetial stomach problem? Thanks for your support and prayers. I am so greatful to have people to "chat" with that have similar concerns and problems. I have a lot of friends to talk with but they haven't had the personal experiences that my forum buddies have. Thanks again for replying.
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Laurie
Indianapolis, IN
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Lady Golfer, Im really not sure. I dont know if splitting it up throughout the day and taking it with milk would give you more protections or not. would recommend though that they check blood tests routinely such as:liver enzymes, kidney function test, and blood counts as high doses of ASA can effect all of these.
I would also sit down with your doctor and ask him: What are the risks involved with me taking ASA? What are the risks of staying on Coumadin? How will you know if the ASA is sufficiently controlling my clotting? What effect -long term- will this have on my veins, arteries, etc?
At least you will have a better understanding then and will be able to make a knowledgeable choice. I really wish I knew more about this new therapy for you.
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Lady Golfer
Glasgow, KY
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I called my Surgeon's Office with my concerns. The nurse spoke with him and he sent message, "Relax, You're going to be okay." He knows how anxious I am about all this. I guess they know what they're doing and are not as concerned as I am. Maybe I should be more optimistic, huh?
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