Absolutely. I’m doing myself no favors doing “research.” So far today, I’ve worried that whatever med I’m put on will cause me to become fat and my muscles to deteriorate so no amount of weight training can be of use. Also, I’m worried about sexual dysfunction which was confirmed by one genius on some site since Coumadin is a “blood thinner” and will interfere with erections. Of course, blood thinners don’t really thin the blood. They just slow down the time for the blood to clot.
I need to chill out until I see my doctor on Monday.
I have Factor V Leiden and have been on warfarin for over fifteen years now. I think I did experience some slight hair loss at the beginning but it’s hard to remember, and I had cancer and chemo later so not sure what caused what.
I was told not to overdo it with the dark green veggies (not just leafy, to include dill pickles—one of my favs) but that to try to eat about the same amount on a regular basis. Also grapefruit/juice can affect the warfarin but I think that’s true with a lot of medications.
The biggest side effect I notice now is the bruising on my arms…dime and quarter-sized splotches that maybe look like liver spots. I think this becomes common the longer you take it but don’t know of anything that can be done about it. Anyway, they come and go.
I don’t know about anybody else but my dosage changes frequently, sometimes month to month, as the doctor receives my latest INR/Protime. It’s a pretty precise balancing act and do take the amount you’re told at approximately the same time every day.
The whole thing is disconcerting at first but you get used to it. OH, be careful with knives. And I don’t even peel shrimp anymore because sometimes the shells prick my fingers. Just a precaution. Better than getting blood clots, though. Good luck and try not to let this worry you too much.
I wanted to add, I’ve had different doctors monitor my blood over the years and although some might like it to be on the higher side, and some like to keep it on the lower or at least in the middle, there’s a certain scale the reading is supposed to be kept within so I don’t see how there can be too much margin for error, no matter who’s doing the monitoring. IMHO
This. But the effect of coumadin is averaged over many days. If I stop taking it (I have to a number of times before an operation or even a tooth being pulled) it takes a couple weeks for the INR (the clotting test) to get back to the correct range.
The important thing is to have the INR test done regularly (every 6 weeks for me) and abide by the doctor’s advice. The pills come in 1, 2, and 5 mg sizes (probably one or two more) and scored to halve easily. For the past two years, I have been taking 5 mg on MWF and 7.5 mg on SuTuThSa. But some people need only 1 mg every day. It depends on how good your liver is at clearing it.
The reason for the frequent tests is that there is a rather small window between the therapeutic dose and a dangerous dose. My dose (for atrial fibrillation) is calibrated to produce an INR between 200 and 300. People who’ve had valve jobs want between 300 and 400. Above 500 is dangerous.
I usually have a salad every day. More in the summer and my INR may go down a bit. I was surprised to learn that chickpeas are high in K. I like hummus, so that is a downer. I do eat sometimes but not too often. And not this week because I have an INR due Wednesday. Occasionally I have been tempted to raise the dose on my own after I’ve had kale or something like it (kale is especially high in K), but then my doctor and I are on different pages so I have resisted.
My doctor and I have discussed the possibility of switching to one of the newer thinners. Two reasons I have chosen not to. Most importantly, in case of an accident, injections of vitamin K will immediately restore my clotting function (incidentally, coumadin is actually a vitamin K antagonist and you can simply ingest more of the K than there is coumadin). The newer drugs act along different pathways and there is no known antidote (this might change, of course). Second, the province doesn’t cover the newer drugs and they are already a good deal more expensive than coumadin. (The province will cover it if the doctor certifies that he cannot find a stable dose of coumadin, which is definitely not the case for me.)
I am utterly unaware of any side effects. As it happened I started taking coumadin and metformin at the same time. The latter has a side effect of causing weight loss–at least in some patients–and sure enough I lost 20 lb over the following two years, having made no attempt at dieting. (Since then I started actively dieting and have lost an additional 45 lb, but that’s another story.)
Thanks Becky and Hari Seldon for the feedback and encouragement.
I talked to my hematologist today and he told me about the newer thinner, called Xarelto. I don’t think that insurance will cover it, unfortunately. It’s probably all the same, basically. I’m considering buying a home testing kit for Coumadin. They might be pricey, though, but it’s just a one time price (outside of the strips). If I needed to get my blood tested every six weeks in a clinic, that’s not too bad, I suppose.
I just want to make a quick note here about an earlier concern I mentioned about sexual dysfunction, so stop reading if it might be a little too sensitive to read: I probably need to correct something I said earlier as to these drugs not being “thinners.” My doctor said that they do thin the blood. Earlier I mentioned some comment online about how Coumadin et al might cause erectile dysfunction since the thin blood will cause erectile issues. I’m no expert, but I don’t see how thinner or thicker blood might interfere with penile erections. In fact, I’d think thinner blood might work better for the process (if it has any effect at all). I mean, think about filling a balloon with tomato sauce and another with water.
Everybody is a mutant one way or another. Yours is just a little more obvious to you. It is rare to not have something wrong with you. For myself, I need to take an antidepressant for the rest of my life, or it will end sooner. A bad diabetic may need to check their blood sugar three times a day and eat a very restricted diet. Some people are prone to abscesses, some have eczema, some are gluten intolerant. The good news is that your condition is diagnosed and treatable.
I’m thinking that for some people, starting on coumadin is a sign of major disease so they start taking it easy on themselves, and then gain weight. I can tell you that people on coumadin are not ‘frequent fliers’ either for the ambulance or the ER.
Do what you can to manage your health, deal with each crises as it comes, and try not to worry too much.
Oooh, my favorite joke: What’s the difference between the red and blue thermometers?
That does make sense. I still am not on any blood thinners (as my doctor is trying to get authorization for Xarelto – good luck on that!) right now but I’ve noticed four small pimples around my nose/mouth area. These kinds of things are usually rarely noticed and just go away and you think nothing of it. But one of the things I came across online is that some people get “acne” from Coumadin. Now, if these little otherwise insignificant pimples showed up when I’m super-self-conscious five days after starting whatever drug, wouldn’t I go nuts assuming they were due to the meds?
Lots of great advice here telling me to take it easy. That’s the best thing to do, really.
I have a lot of experience with having to go on a lot of different medicines. So here’s my advice:
Honestly, one of the worst things you can do on the Internet is go around looking for people with side effects. Pretty much every side effect happens with any drug, and you’re only going to see the people who have problems.
I’m not saying you shouldn’t stay informed, but I am saying you are putting the cart before the horse. Take the drug, and then see if you have side effects.
I mean, right now, you might even have side effects because you are expecting to have side effects.
My dad had three clotting conditions, and I got two of them, Leiden V and Protein C. At least I didn’t inherit his Prothrombin mutation, so I guess I am not a mutant. Yay!
I had a DVD and a pulmonary embolism, so I’ve been on Warfarin (Coumadin) for 10 years (and, yes, I do call it “rat poison”). If I go off of it for a surgical procedure, I have to take Lovenox for a week to get back on to it, which is a royal pain (it’s self-injected) and very expensive (the 20% co-payment is $120). I understand this is due to the Protein C, and that most Warfarin users don’t have to bother.
I have noticed no side effects from the Warfarin. Prednisone? That’s a whole other story, including weight gain, psychological effects, and a peripheral neuropathy that makes my palms and the soles of my feet burn. (That last effect has persisted even after discontinuing Prednisone - I still get it from time to time.) The stuff is plain evil.
