Inr Dropping Though Warfarin Dose Going Up, Also Leg Spasms-what's Going On?

This is a bit long, sorry.

I know it takes awhile to get the dose right, but this seems kinda weird to me, particularly since I'm getting somewhat conflicting answers from different doctors. I know I'm not missng doses, I have a pill box I use and an alarm set to go off and remind me to take it. The doctors at the blood clinic don't seem overly concerned, but they have said that they usually get people at a theraputic level faster than I'm going.

I don't really take any other meds, I had a few Norco (hydrocodone acetomenophen) prescribed by the ER for a really bad headache a few days after I got out of the hospital and very rarely will take a dose for back pain, but not very often. I've taken six doses in the past five weeks, hardly regular use, and none of them even 48 hours prior to an INR (even though they say it doesn't have any significant interaction). I don't take any vitamins or suppliments, drink nutritional shakes, or anything like that.

I'm 34, female, quite thin (over the past 5-7 years weight has been around 106, I'm 5'7, when I was younger it was around 120-127). I've been gaining a bit of weight over the past three weeks, around 110 right now. I've had a boarderline eating disorder since I was about 15, but I've really been trying to eat more recently, some days are better than others.

Had multiple embolisms in both lungs diagnosed about five weeks ago (hormonal birth control plus 11 year+ back problem that eventually had me in bed for six months.) Doctors shrugged at the back pain and ignored high pulse, fatigue and respiration for three months until I wound up in the ER with chest pain. I was in the hospital for about 4 days, then went home with warfarin and lovenox, after five days at home was taken off of the lovenox.

I used to walk at least 8-10 miles a day, a few years ago the back pain got bad enough that I couldn't do that anymore and my activity level really dropped off, pretty much nothing more than once around the block with the dog and walking to the mailbox, etc.

After being ignored by doctors for years who couldn't find anything wrong (and refused to give me pain meds) I finally found the chiropractor that used to work on me when I was breaking horses, long story short the last fall I took 12 years ago (that ended my riding due to pain) had knocked my hips so far out that one leg was almost 2 inches shorter than the other one. He was very concerned about my heart rate-which was all over the place- and breathing. He got my back fixed in about three visits and I started to resume some regular activity (cooking, cleaning, ect) but still had some energy level issues and wasn't walking all that much.

Then I started getting mild to moderate chest pain, after four days my husband convinced me to go to the ER and they found multiple bilateral embolisms. Probably had been collecting there for months, who knows.

They put me on Warfarin, and for a few weeks things were going pretty well. I can't remember the starting dose, but INR was low so went to 5 mg five days and 7.5 mg two days, INR went up to 3.6 so dropped it to 5 mg five days and 2.5 mg two days, had two readings that week (one at gp, one at blood clinic) and INR was at 2.5 and 2.6.

Two weeks ago when I went in reading had dropped to 1.8, so they raised the dose to 5 mg every day. When I went in Thursday, it had dropped to 1.2. New guy I hadn't seen before raised it to 10mg Thursday and Friday and 5 mg the rest of the week, going back in next Thursday for diagnostics.

I am avoiding high vit. K foods, at first I was eating about a cup of brocolli once a week, other greens were pretty much iceberg salads (low in vit. K) twice a week and frozen vegs (peas, carrots, string beans) every night. When the first reading was low I dropped the brocolli but it obviously didn't help my INR go back up.

I did eat home made trail mix last week with cashews in it, but the whole mix probably had less than 1/2 cup cashews so that's only at max 28 mcg overall, and I wasn't the only one eating it so really much lower, at best 1/3 of that. Nowhere near what I was getting from brocoll. Of course it didn't occur to me to mention this, it took me awhile to find a list that even had them on it-the list they gave me at the hospital didn't. And I didn't search for the k content until after my second low reading, when I checked everything in the mix.

I've been eating more fat and protein than I was before, more cheese and stuff, and slightly more starchy foods (noodle mixes, potatoes). I tend to gravitate toward grains more than anything else, I've always been a big fan of bagels, rice, etc (though no rice cooker at the moment, so not eating rice because I'm to lazy to make it on the stove).

The only other difference aside from generally eating more is that my excercise level has been steadily going up. Way back at the top of this I mentioned I used to walk at least 8-10 miles a day. For about two weeks after getting out of the hospital I didn't do much, walking around the block.was enough to make me light headed and my chest start to hurt. Over the past three weeks or so I've been starting to walk more, gradually been increasing it from about 1/2-1 mile up to, best estimate given approx walking speed and time spent, 3-5 miles once a day with my dog (currently at night after it's cooled off). This is a pretty normal walk for me when I'm not in a ton of pain, and it doesn't feel like I'm overexerting myself.

I've always been a walker, I generally prefer to walk over driving anytime I can. I don't do it to keep in shape, I just enjoy walking around and looking at things.

I told the blood clinic doctor and my gp, but realized after the fact that I'd seriously underestimated the length of the walks, I knew the time spent but didn't realize how far I was actually going, I was figuring it was about a mile or so (I'm terrible at estimating distance). I'll correct that next time I go in.

Anyway, I did tell them that I was walking considerably more. The first doctor at the blood clinic two weeks ago said that it could change my INR from increased metabolism. The second one on Thursday (new guy for me) said to the walking probaly wasn't making a difference and the INR drop was probably from eating more in general, even though I'm avoiding foods high in vit k I'm getting more from low vit k foods due to quantity. My gp doesn't seem to have an opinion on the matter.

Looking online it seems like INR is sometimes changed by activity, and sometimes not and that it can either go up or down in response. This is, to say the least, confusing.

In addition, a little over a week ago I started getting 'restless legs', twitching/spasms over my entire leg, calf, thigh, and sometimes the sides of my hips. Sometimes these are so tiny you can't see them, other times my whole leg jerks around a bit. They stop if I move my legs, massage them (stops in both legs temporarily if I am rubbing one) or if I stand or walk around. Sometimes this will be constant, all day and night, sometimes it will stop for a little while or a couple hours. It doesn't matter whether I'm wearing compression stockings or not, they are still twitchy.

I get plenty of water throughout the day, and I've never had symptoms of low potassium (etc). Part of the reason I was eating the trail mix was to try and get the potassium level up and see if that was part of the issue, I took a potassium suppliment one day but it's only got 3% of the rda in it, and didn't seem to make any difference.

The gp took some blood and is analyzing for electrolyte imbalance, which I've heard can be caused by warfarin (results aren't in yet, hoping for a call Monday or Tuesday). Her only other suggestion was that it could be caused by increased excercise, but I feel like I built up to my current level at decent pace, I don't 'push' myself until my legs are tired and they don't feel like muscle strain (not to mention I've never gotten twitchy muscles from anything before, and I used to be very active). They're a bit sore now but I think that's connected with the constant twitching more than the walks, which actually make them feel better.

When I searched online I found a few people that had restless legs as a side effect from warfarin, but didn't have any info as far as a possible diagnosis results from a doctor.

So I decided it would be a good idea to ask people who are actually taking Warfarin about it. So, any ideas?

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Hi puppy,

I haven't taken Warfarin myself, but seeing as no one responded yet, I thought I'd offer a piece of my own perspective after reading your story.

In response to the question in your thread title about your INR dropping, a part of me wonders whether your body could potentially be building a tolerance to the Warfarin and therefore causing it to be less effective over time?

Regarding the leg spasms, I've seen muscle/joint pain/skin crawling and things like that listed as side effects, but nothing specifically describing what you mentioned as twitching legs or leg jerks on the drug monograph for Warfarin. My thoughts are that it may just be a rare side effect that hasn't been given much attention by the medical community at large and may be one reason why it isn't listed anywhere except on personal reviews from other patients.

All in all, it seems to me like you're doing the right things by watching what you eat and exercising/walking regularly. Sometimes people respond to these types of meds in ways that don't make a lot of clinical sense, but the process of trial and error can feel like a drawn out experience when you're in the moment.

I'd be interested in hearing what others have to say as well.

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Yeah, I switched doctors and he was pretty much like "this isn't going to work for you" and switched me to Xarelto (which caused horrible fatigue) I'm off of everything now.

Vit K is produced in the gut, so my body apparently responded by just making a ton more of it and/or I just have a natural tolerance.

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