Don't trust the doctors. Don't trust the pharmacies. Trust yourself

[Protimenow]

This is a bit of a cautionary tale.

My ENT specialist went on medical leave, and another doctor in his practice saw me. Her exam of my nose was more aggressive than the doctor for whom she was filling in. She gave me medications for a yeast infection in my throat. I went to the pharmacy - which has been filling my warfarin prescriptions for years, and picked up the medications.

Six days later, I had severe pain in my upper calf. I checked my INR -- 4.7.

I then checked online to see if any of the new medications interacted with warfarin. BOTH apparently did (one much more than the other).

The next morning, the pain was worse, it was hard to bend my leg without pain, and it felt as if I had fluid between the back of my knee and my calf muscles.

I went to the emergency room, because I was concerned about fluid or blood impinging on my knee joint. The INR at the hospital - 5.3. I usually don't worry about an INR in that range - I eat some salad, discontinue my warfarin for a day, then retest. This time, because of my leg pain, I thought that it might be different.

I called the doctor. She eventually called me back. She 'apologized' for giving me the medication. She said that my use of warfarin wasn't in her chart - IT WAS. I filled out the papers when I visited the doctor for whom she was filling in. HE tried to schedule a procedure, but wanted me to discontinue warfarin for a few days before the procedure and to bring my meter to check that my INR was low enough to safely do the procedure.

This 'new' doctor apparently didn't look at the chart before seeing me.

She tried to act as if my taking warfarin was something new, that she wouldn't have known about. She asked me 'how long have you been taking warfarin?' I told her 'twenty-five years.' Again, she apologized. My cover sheet, that says that I take warfarin may not be in the chart NOW - after she failed to look for it and I reported a problem. She offered to have me re-start on one of the medications that she originally gave me, with some reports of possible interactions.

---

What's as distressing about her inability to look at the chart was my pharmacy's inability to check for drug interactions. They should NOT have filled the prescription. Their computers should have detected an interaction. The sheet that they printed out about the medication did NOT mention interaction with warfarin.

I trusted that a) the doctor wouldn't give me a medication that interacted with Wafarin and b) the pharmacy would have detected this and called the doctor.

My point is this -- I may have been a bit naive to trust that the doctor and pharmacy knew WHAT THE HELL THEY WERE DOING. I may not be quite that naive with new medications in the future (and may not even believe the summary of risks and benefits that come with my prescriptions).

My other point -- if I didn't have my own meter, and be able to self-test, I wouldn't have been able to detect that my INR was higher than it should be. Anyone on warfarin who IS able to test SHOULD have a meter available and be able to test if anything unusual (like bruising or swelling) should occur.

End of lecture.

 

[LondonAndy]

Wow, what an ass that doctor was. We do tend to trust the professionals of course, after all, they are the ones who are supposed to know what they are doing. But since having my AVR and doing just a little bit of studying just of cardiac issues I have realised what a nightmare it must be to be a general doctor - so much you need to know on so many topics. Fortunately I haven't encountered a twit like your doc, but I took to heart the words of a doctor who once said to me: "it's your health, your medical condition. Take responsibility for your own health". So I completely agree with your comments, and have learnt to always say that I am on Warfarin and Insulin when I see somebody who is about to treat me for something or other, even if I see them fairly regularly. I also always wear a Medic Alert bracelet, and carry a lightweight first aid kit in my backpack.

Hope you are back in range and ok now.

 

[AZ Don]

it's your health, your medical condition. Take responsibility for your own health

This is so important these days. Dr's are rushed and so they take shortcuts. It would be interesting to hear what the Pharmacy's excuse was. You would think this would be automated by now. Medical errors are the third leading cause of death in the US.
http://www.npr.org/sections/health-...ertificates-undercount-toll-of-medical-errors

To mitigate this risk it is important to be as involved as possible: asking for and reading test reports, being knowledgeable about your condition and medicines, checking prescriptions, etc.

 

[pellicle]

Agreed (agree with all above posts too)

Hope your knee is improving. I assume you had a bleed in the knee joint. I hope that brings no lasting damage.

It's a good thing you have a good head on your shoulder, God knows what would have happened if you relied on them.

 

[Warrick]

Hi, yep couldn't agree more, I was on miconazole early on after my op and my INR got up to 7.7 and that was with the doctor AND the pharmacist looking after it , the pharmacist was doing the testing and had told me it might affect it, might haahaha
flying solo now, I'm the chief cook and bottle washer when it comes to my INR

 

[Agian]

Hope your knee is OK. Live and learn.
It's hard to soar like an eagle, when you're surrounded by turkeys.

 

[Paleowoman]

The more conditions a patient has and their medical history, the more important it is to thoroughly investigate all medications that they are prescribed. Every new medication I get I read the Patient Information Leaflet and then the 'Summary of Product Characteristics' produced by the pharmacutical company online before I take the new med. I've had a few mistakes in prescribing which has made me very wary. So trust yourself always YES ! Always. And always check the medications thoroughly. It is not good that these situations happen but that's the way of modern medicine

 

[Protimenow]

I partially trusted the pharmacy. They caught an error in an antibiotic prescription last year, and had the prescribing physician change it to something else.
I read the materials that were printed by the pharmacy and came with the prescriptions, so I thought that I was safe to take it.

As far as my knee is concerned -- thanks for your comments. Fortunately, there didn't appear to be a bleed behind the knee - although it felt like there was some kind of congestion back there. The Emergency department didn't want to do an MRI to accurately evaluate it.

What seems to have happened is massive bruising in my calf muscle. I had a LOT of pain on Monday, and it was painful to straighten the leg, put any weight on it, or to walk. My knee clicked when I walked (which suggested that something threw it out of alignment). For now, it's still sore, but I can straighten it out, bend it with less discomfort, and expect that it'll be back where it was before this episode.

I skipped a dose the night that I left the hospital and, uncharacteristically for me, had a salad for dinner. Ysterday, my INR was 3.7 (the lab may have determined that it was 3.9). I'll test again tonight, but am pretty certain that it's back in range.--I just checked - it was 3.0 (perhaps 3.1 or 3.2 at a lab) - and I'm planning to stay in range when at all possible.

I hope to remember to keep an eye on the medications - not even to trust the pharmacy or its paperwork - from here forward.

I'm sure glad that I had a meter for my late Sunday night INR test. I knew once I tested it that I needed to to do something to bring it down (a drastically reduced dose, although a skipped dose would probably have been pretty smart, too). If I was in a standard 'anticoagulation clinic' program, I may have gone a month before detecting a problem -- and this could have been a REAL problem.

 

[Paleowoman]

I partially trusted the pharmacy.

I know the parmacists who dispense my meds quite well and last year they made a mistake which would have landed me, or indeed anyone, in ER, when in error they dispensed Pregabalin instead of Gabapentin in the same dose for the neuropathic pain I had. My dose of gabapentin was 300mg three times a day but they gave me a box of pregabalin 300mg with instructions to take three a day which would have done serious harm. Lucily I read the box. I've seen press reports of people taking a med dispensed in error ! And earlier this year I was dispensed a med for oral thrush (which I got from the inhaled steroids I take) which had the neonates dose on it because the pharmaceutical company had completely changed their prescribing recommendations which were clearly in the patient information leaflet. I let the doc know but they weren't interested ! Result - I had to take a much stronger med when the neonate dose of that one didn't work. But always docs forget I have a history of duidenal ulcer and several co-morbidities...doh !

 

[honeybunny]

Protimenow, which pharmacy do you use (out of curiosity)? I use Walgreens.

Glad you self-advocated and that you are now on top of things. I'm not on Wafarin but your advice is good for anyone on any medication of any kind. Thanks so much for sharing~

 

[Protimenow]

Paleowoman - I got oral thrush for the same reason - I wasn't instructed to rinse my mouth out after using the damned inhaler.

honeybunny - I'm using Costco pharmacy.

It may be time to make a change....

 

[Paleowoman]

Paleowoman - I got oral thrush for the same reason - I wasn't instructed to rinse my mouth out after using the damned inhaler.

I've always rinsed my mouth out after, and gargled water in my throat, so it was a mystery why I got thrush - maybe I was just out of sorts ? Anyway, the standard prescription of Nystan oral suspension changed from 1ml 4 times a day to 4 - 6 ml 4 times a day, a big change, but the doc didn't realise, nor did the pharmacy, it was only when I read the patient leaflet that I realised the change. I phoned the pharmacutical company helpline and they informed me that all the relevant bodies had been informed of the change. Doc told me it wasn't his fault as their computer didn't register the change BUT I had informed them right away, the day I got the Nystan prescription, and they had ignored me ! I ended up having to take flucanozole 100mg for 14 days to clear the thrush. We live and learn !

 

[Protimenow]

It's funny. The first ENT had me taking nystatin lozenges. I don't think they did anything to my INR. After finding that those didn't resolve my thrush, he gave me another medication (and I didn't save the bottle) that seemed to take care of the thrush -- but the thrush came back.

This other doctor gave me Fluconazole pills plus a nystatin suspension that I had to gargle. I was taking BOTH, so I couldn't tell which (or both? perhaps they had an additive effect?) raised my INR. When I checked for interactions with Warfarin, I found different sources that said BOTH medications have reported interactions with warfarin. (To be fair, it was the nystatin ointment, which I wasn't taking, that was associated with increased INR. I thought that the bigger contributor to the reaction was the Fluconazole pills -- but, as mentioned, taking both concurrently may have caused a synergistic effect of some type.

My wife did some searching -- she suggested that gargling a diluted apple cider vinegar solution may also kill the yeast. A chemist friend of mine, who used to manufacture cosmetics today confirmed that fungi, yeasts and molds don't like acid environments - which is the reason they put citric acid in cosmetics. I'll try the apple cider vinegar gargle for a week or so (it's worth a try).

I haven't confronted my pharmacy yet - but they'll probably do as yours did, and point fingers everywhere but inward.

I told my tale to a director of a major medical university's medical research department (as part of an entirely unrelated project), and she was defensive, saying that the doctor and pharmacy are probably overworked and didn't have time to take a close look at my history or search for interactions. In that context, she is probably right.

My original point still applies: Don't trust the doctors. Don't trust the Pharmacy. Trust only yourself.

 

[pellicle]

My original point still applies: Don't trust the doctors. Don't trust the Pharmacy. Trust only yourself.

I appreciate that you have had a tough experience, but for the benefit of the lurking reader I'm going to come out and say that you do need to trust them, at least enough to work together, but that should not be blind faith.

You and the health professionals need to work together as a team, and not just black and white not trust them.

They are not gods and so you should expect that they make errors and omissions. As you do too.

Test , and see should be the motto.

Test weekly and test soon after changes in medicine or new medicine. It's cheap and beneficial

 

[almost_hectic]

What's the phrase, trust but verify... I trust the doctors and pharmacists but I always ask, even if they find it annoying. I ask the doctor and even if they reassure me, I still go and ask the pharmacy when I fill the prescription

 

[Protimenow]

Right. Perhaps I was TOO black and white about it. In the words of Ronald Reagan, Trust...but verify.

I've been trusting the doctors and the pharmacies, and most of the time they get my almost blind trust.

Five years ago, I trusted my InRatio meter -- and was burned when I had a TIA because it was giving me the wrong values (it said 2.6, the hospital said 1.7). So, now I get monthly blood draws just to verify that my meter's results are approximately equal to the lab's. (In truth, if I was stranded on a desert island, with my Coag-Sense meter, a box of testing supplies and large box of warfarin pills, I would not be concerned about not being able to verify with blood draws, but having the ability to do a second test for verification is a minor comfort).

My point that it's ultimately up to me (or you) to be certain that your INR is good should still apply. Doctors, pharmacies, and us all make mistakes. So - trust...but verify should be a good way to approach this.

 

[Protimenow]

I've always rinsed my mouth out after, and gargled water in my throat, so it was a mystery why I got thrush - maybe I was just out of sorts ? Anyway, the standard prescription of Nystan oral suspension changed from 1ml 4 times a day to 4 - 6 ml 4 times a day, a big change, but the doc didn't realise, nor did the pharmacy, it was only when I read the patient leaflet that I realised the change. I phoned the pharmacutical company helpline and they informed me that all the relevant bodies had been informed of the change. Doc told me it wasn't his fault as their computer didn't register the change BUT I had informed them right away, the day I got the Nystan prescription, and they had ignored me ! I ended up having to take flucanozole 100mg for 14 days to clear the thrush. We live and learn !

It's interesting that you were prescribed Fluconazole. According to an interaction checker on Drugs.com, there's a major interaction between warfarin and fluconazole. I used the nystatin lozenges a month or so ago, without complete elimination of the thrush. When I used the nystatin oral suspension AND the fluconazole, my INR jumped. I didn't know which antifungal caused the increase, but I stopped both.

As I just mentioned, I'll try gargling with dilute apple cider vinegar, and hope that the acidity will kill the candida in my throat - or at least scare it out of my system.

(FWIW - the doctor also prescribed Ranitidine - generic for Zyrtec (I think) for what she called a reflux thing near my larynx. After I started taking it, I didn't notice much interaction - except that my INR was in range (and previously gave me a bit of a challenge getting it there). The listing showed a minor interaction between warfarin and ranitidine - and I figure that I'll start using it again, daily, and adjust my dosage to accommodate for any effects.

It would be good if there was a single, reliable and accurate source of information for warfarin interactions.

 

[Paleowoman]

It would be good if there was a single, reliable and accurate source of information for warfarin interactions.

This UK website for health professionals seems pretty good at listing warfarin interactions, which includes fluconazole: https://www.medicines.org.uk/emc/medicine/25626#INTERACTIONS

As I just mentioned, I'll try gargling with dilute apple cider vinegar, and hope that the acidity will kill the candida in my throat - or at least scare it out of my system.

Do you use a spacer with your inhaler ? That helps prevent thrush, plus brushing teeth straight after in addition to the rinsing and garlging. I've only had thrush twice, once after antibiotics and the second time, when I got the fluconazole, which I've no idea the cause of.

 

[Protimenow]

As soon as I got Thrush, I stopped using the damned inhaler. It didn't seem to help much, anyway.

I don't know about a spacer - I just sprayed directly into each nostril.

I probably still have thrush, and am doing the apple cider vinegar gargle. I expect that sometime before 2020, the thrush will be gone.

As far as the interaction that caused my INR to spike is concerned -- I mentioned the problem with my leg. It wasn't anything broken in my knee. The ultrasound was negative for any leaky vessels. I watched my bruise at the back of my leg getting larger and larger, and figured that, after a few days, the bruise would stop growing, my leg would hurt less, and I'd be nearly finished with this damned thing,

I was wrong - I had trouble with the leg when I tried to sleep last night, and it was the worst that it's been since it started more than a week ago. I called my primary care physician, and got to see an orthopedic specialist this afternoon. He thought that I got what's called a Baker's Cyst (it can't be - my oven doesn't work), and his description matched my symptoms. It may take a few more weeks to resolve. I'm having an MRI tomorrow or the day after. I'm not entirely sure how the high INR contributed to the formation of this cyst (or to it breaking).

In any case, whether or not the high INR is connected to the Baker's Cyst, my admonition to self-test, weekly, is one that I firmly stand behind.

 

[Paleowoman]

As soon as I got Thrush, I stopped using the damned inhaler. It didn't seem to help much, anyway.

I don't know about a spacer - I just sprayed directly into each nostril.

Inhaler in your nostrils ? Do you mean a nasal spray ? An inhaler is for the lungs - you use it via the mouth and inhale it into the lungs. If you have a nasal spray there isn't a spacer for that LOL But you shouldn't be letting the nasal spray go into your throat....or mouth so mystery why you have thrush.