THE HYPERSENSITIVE PATIENT REACTS WRONG TO DRUGS
As I keep telling doctors who don’t listen, we CFS folk like me often have a very low tolerance for drugs – and have a very difficult time with new ones, because the side effects become difficult or worse before we reach a therapeutic dose (if we start low, and titrate up) that will do something useful for us.
If we get thrown onto a full adult human dose, side effects can come fast and furious and land one more medicine on the list of ‘I’ll never use that cr*p again’ drugs which we’ve tried and not been able to tolerate.
I blame the system which clears drugs from the body, liver and kidneys. For drugs which must be disassembled into metabolites after they do their jobs, this is often the liver. And our livers seem to be delicate, compromised by the job of dealing with the aftermath of NOT being able to convert our food and stores into usable energy. Stuff piles up, and must be processed more slowly.
I can’t tolerate much alcohol (1/3 of a glass of wine two or three times a year, a dilute Margarita on vacation) for the same reason: alcohol is processed by the liver, and I feel unpleasantly drunk on the small quantity – and the feeling lasts for much too long a time for me to look forward to drinking.
I say blame, but the poor liver is doing the best that it can.
It is MY job to try to protect my liver from unreasonable additional demands.
I say try, because the one thing you know for sure when you end up in a hospital with chest pains is that ‘they’ are going to try to do something about that, and the something is often drugs – drugs designed and tested on (usually) adult males. Leaving aside the shameful proportion of women in most studies (0-25%), and the idiocy of using results on men to dose women, the insistence of the cardiologists on interfering with anything cardiac in your system – blood pressure, cholesterol, platelets – with drugs is hard to refuse or moderate when you are in the middle of an emergency.
So you get subjected to ‘the protocol’ of recommendations from some panel at NIH or the American Institute of Cardiology or whatever – because, supposedly, this is best for the majority of people in your ‘condition,’ which, at this point, has often not even been properly diagnosed.
‘Statistics’ show more people survive out of the center of the bell curve. So that becomes the norm for EVERYONE.
But what if you’re NOT everyone, and out on a tail of the distribution?
The protocols are so regimented that doctors will NOT ignore them – they fear being sued.
If they damage you by following the protocol, they have given you the ‘standard of care,’ the best guess of the whole medical establishment (that sounds so formidable, doesn’t it?), and no jury will convict.
If they have, instead, NOT followed the guidelines, and they damage you (you are damaged, ergo ‘they’ must have damaged you), they may find themselves defending going ‘off protocol’ in front of some jury without a medical degree in the bunch. And will be accused of following their own judgement over the combined wisdom of the medical profession and all the professional licensing boards, and… you get the drift.
They will even TELL you this, and tell you that it is all UP TO YOU to make a decision, knowing perfectly well that people in the throes of a heart attack are in no condition to make an informed decision about LUNCH. And will sign the form, regardless of whether they would do that on any day in which they knew what they were doing.
Add to that the fact that many of these drugs mess with your mind, and your spouse and children are terrified, and you’re afraid the doctor will refuse to treat you if you refuse to follow instructions – and most people open their mouths or bare their midriffs and accept the doctor’s ‘choice’ of drug.
Not a good system.
Better than none at all?
Just hope you’re in the middle of the bell curve and are having a nice standard heart attack – the one that generated all those lovely statistics and is helped by the protocol.
What if you KNOW you are not that patient?
Keep track, as best you can, of what you have taken, why (if you even find out), how much, and whether you had any alternatives at the time. This is extremely hard to do with zombie-mind; a spouse or other person with you – and a single notebook – is the best protective device: don’t leave home without one.
Make the person giving you things SLOW DOWN and explain them. Have them slow down enough so you can WRITE what they say down in your notebook – and read it back to them.
They have the WRONG information on you
I found an awful lot of errors of very basic details when I slowed people down to ask these questions.
“You’ve been taking this for your blood pressure…” “No, I’ve never had a BP problem, and the first time I took that drug was yesterday when YOU told me to take it.”
“It says here that you are a diabetic so I’ve ordered the diabetic diet…” “No, I am NOT a diabetic, have never been one, and have never even had a glucose tolerance test. Someone before you decided a single lab result ten years ago where a single reading was higher than normal and in the PRE-diabetic range made an annotation, and I can’t get hospital records to remove it.”
“I see you had three stents put in yesterday.” “No, I’ve had three catheterizations. On the first, two weeks ago, they did nothing, said the pain wasn’t cardiac, and sent me home. On the second – last week – they stented a place which turned out not to be related to my chest pain. And on their third try, they finally seem to have placed one of two more stents in the right place.”
“I see you have a cardiac problem, so you’ve been ordered the low-salt diet.” “I don’t EAT a low salt diet. Maintaining proper blood volume is a serious problem for those of us with CFS, and I take EXTRA salt and EXTRA potassium on my food EVERY DAY so I don’t need IVs of saline.” (This last one is a non-starter: they are so wedded to their ideas that they can’t comprehend this. I have my husband bring in a salt shaker.)
How is all this relevant right now?
For the last three weeks, after I dumped all the other cardiac drugs they gave me in the hospital, which had major and impossible side effects (see prior posts), I have been trying VERY hard to stay on the dual anti-platelet therapy (DAPT) which the interventional cardiologist (the guy who places stents) insisted was absolutely required to keep the stents open, and wanted me to take Effient + a baby aspirin for at least a year, probably a lot longer.
So, for more than two weeks, since the other drugs were out of the system, and not – finally – causing the side effects I stopped taking them because of, I have been on a SINGLE drug.
EFFIENT. Prescription brand of prasugrel.
Nothing else, except the Celebrex I’ve been on, at the SAME dose, for more than 15 years – the only drug I could tolerate which would remove most of the CFS pain. (Let me tell you some day about that years-long struggle with pain specialists to find SOMETHING that would work. Not today.)
So when I noticed that my BP was creeping up, after having been reasonable (under 140/80), and that the intestinal cramping which has become a major problem was getting worse, I wondered what was going on.
I have been writing EVERYTHING down since the hospital, so I have a record of every drug taken, when I ate what, what the ultimate results have been, and any other symptoms (my temperature variation has been much worse than normal, for example).
Saturday evening I had a BP spike that got up to 180 something. A racing heartrate was uncomfortable. I went to bed, got some rest, and the next morning things seemed better. The spiking seemed to correlate with the cramping (correlation is not causation), and eating made things worse.
I determined never to eat anything again.
Sunday afternoon, I started feeling the prickly sensation on the back of my hands and arms and a spaciness which is annoying, and started taking my blood pressure at hourly intervals. The racing heartrate was there part of the time, but not always, and rest helped.
I finally figured it out: I was on ONE drug. It HAD to be the Effient.
I did NOT take the Effient dose on Sunday night.
When the BP hit 224/107, around 12:30 that night, husband drove me to the hospital.
There, the triage nurse got 200 something/117, and they decided I needed an EKG. And then, oh joy, they stuck me in an ER cubicle – a doctor came in, bothered the cardiologist on duty, and eventually something odd happened: the BP slowly came down over the next four hours in the middle of the night, me trying to get some sleep, and husband hunched over a chair.
But they didn’t give me anything – which actually turned out to be a saving grace – and sent us home after 4AM to recover, sleep, and with instructions to go to the cardiologist that very day.
Monday morning quarterbacking
I talked to the office nurse because the BP was climbing alarmingly again as soon as there was someone there. She arranged for an appointment that afternoon. I had remembered during the night that one of the meds I dumped earlier was amlodipine, a calcium channel blocker, which carried the label designation: take if BP is over 160/85. I asked the nurse if I should take it. She said yes – I swallowed one of the little devils.
By the time I got to the office that afternoon, the BP was down under 150, and we all stopped freaking out. Well, okay, only husband and I were freaking out. There is nothing like the nurse telling you your BP is fine to calm you down (and no, I don’t have anxiety), and make you willing to listen. Somewhat.
The cardiologist I saw (another new one – I’ve seen eight of them at this practice now) because mine was not there on Mondays, noting in my chart that I refuse to take the Effient any more, put me on clopidogrel (Plavix generic), retaining the baby aspirin, and sent me home.
Nice guy – but the first thing he did was lie to me about how absolutely necessary it is to take your DAPT because the results of not doing it are catastrophic (they are not – I’ve been reading the literature). He implied IMMEDIATELY catastrophic (gave anecdote – not data).
He also lied – and said, TO MY FACE, that a high blood pressure is not a side effect of Effient.
I decided not to argue at this particular point, since he’s not my regular cardiologist, and left with instructions to take the plavix, the baby aspiring, and the amlodipine again, until, in three weeks, I see my cardiologist.
Good enough for me – when I see her, I’ll have bloodwork and three more weeks of journaling.
I took the little devil plavix-clone last night – and will take it tonight.
I took the little devil amlodipine this morning – and will continue to take it for at least a while…
But I already know the amlodipine and the plavix have an overlap of potential side effects (so I won’t be able to pin any problems on one or the other), and that the Effient in my system would take a NORMAL person 7 days to clear, and have no idea how many days it will take this particular person with CFS to get rid of.
So I have no idea what to blame the rollercoaster BP of today on, nor the exhaustion (hospital, too many doctor visits and research papers read, the plavix), nor anything else.
Especially not having a brain which would write fiction today. Which is why I sound so grumpy – I was finally starting to make progress when the side effects decided to take me out again.
The gut cramping has been erratic, but seems less horrible, and I’ve been able to eat without setting horrible side effects off (just minor racing heart, and the BP fluctuations).
Because of surviving the hospital without anything, I’m going to assume I can just ride out anything the amlodipine doesn’t clobber (or causes itself).
Unless the BP diastolic (lower number) reaches 110 (apparently that’s when you’re supposed to head for the hospital). At which point I will consider a second amlodipine – and go to bed – rather than waste the taxpayer’s money being observed. ERs are NOT friendly to people with CFS: those required protocols again.
Am I still grateful to be alive?
Is our beloved Pope Francis Catholic?
Yes, I guess, but by the standard of expense (this is all being VERY expensive) and inconvenience, this whole drug-roll is taking the tiny bit of quality of life I was starting to regain back out to sea.
What do I really want?
To not be on ANYTHING.
There is research which shows practically no difference between a month of DAPT and a year or longer. It’s been a month.
I have no desire to play Russian roulette by trying every BP drug out there – when we all agreed I didn’t have a BP problem until their drugs gave me one. And the new stuff has no guarantees (regardless of what they say at the cardiologists’ about how wonderful these drugs are – I now KNOW better; before, I only suspected it).
I suppose I could continue to take the baby aspirin if they insist.
To be allowed to go back to my hole, now with the better blood flow due to the stents (I AM grateful), and slowly work my way up to a slightly fitter version of sick me, something I was starting to do late last year – but which was probably impeded by the lack of adequate blood flow to the muscles. Even for me, things were not working well.
If in cardiac rehab*, fine; if not, I’ll do rehab on my own once they tell me what they need me to do, because the CFS standard there is to do 5 min. several times a day; rather than 40 at a gym followed by a crash. [*More on that little adventure, which has begun with an awful intake process, later. I moved it back a week since I had this additional ‘experience.’]
Film at 11 – hope I survive the next couple of weeks, or there will be phone calls – and blog posts.
Don’t forget to leave a review at Amazon for Book One of the Pride’s Children trilogy if you are so moved. They always lift my spirits, especially when days pass and writing is on hold.
I am VERY proud of myself – before the last weekend, I was going gangbusters with writing Book 2, and any time my brain cells are ON, I am writing. I am determined – not that I wasn’t before – but this STUFF reminds me what I want (other than not being on drugs).
Has anything like this happened to you? Or are you lucky, like my husband, to usually not get much in the way of the side effects roller coaster ride?
Whoa! I am appalled at the doctor who LIED while looking you straight in the face. I just can’t even! (To echo Joey upthread.) The mistakes in your chart shock me as well. Appalling! I’m repeating myself, but it IS appalling. And I’m angry that your doctors lack integrity.
However, YOU, my friend, are amazing and impressive. It is WRONG that you have to go so far above and beyond to ensure that your medical care is actually right, but I am impressed all over again at your record-keeping, your intelligence, your persistence, your resource, and your TRIUMPH in the face of such odds. I continue to pray for you fervently.
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Thanks. I’m sure they told me a lot of things that were true, but they seem determined to have a single narrative which everyone has to follow.
What do they think – that none of us can use a computer?
Especially those of us who tend to get all the side effects?
Thanks for your support – he would probably say that Effient raising blood pressure is such a rare side effect that it couldn’t be the cause – when I had been taking nothing else for weeks. I thought it best not to argue; the side effects have stopped since I’m not taking the stuff.
I cringe when I wonder what’s the next thing I’ll have to deal with.
We CFS people are just not up to the regular world.
I got no writing done yesterday or today because my brain won’t click on – I’m having a really hard time taking the pills at night when I’m starting to wonder. So I keep writing everything down, and looking for patterns.
The last thing I want to do, though, is spend months trying drug after drug – the trying is very hard on me.
I just want something I can live with.
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After my spell in the hospital with a “simple” condition like heart failure, I’m aware of another problem: staff rotates through shifts, and different people will tell you different things, or fail to tell you stuff you need to know. So far, meds are doing what they’re supposed to do without unexpected side effects — crossed fingers.
And the older or frailer or sicker you are, the harder it is to cope with the constantly changing parade of people, healthy people, through your hospital door.
I’m completely over trusting ANYONE right now.
So glad your meds are doing what they’re supposed to do for you. The side effect exaggeration for me is a feature of the ME/CFS – husband take a handful of pills morning, dinner, and night, and wouldn’t know a side effect if it came up and bit him.
He won’t even listen to the possibility that the long-term use of statins is CAUSING his peripheral neuropathy.
Hope you are continuing to recover. Get extra rest. Do only what you have to do and want to do (as if we weren’t already there). Your support system will feel bad afterward if you don’t let them help, and it doesn’t go well because of that.
I cherish you. Take care of my friend.
I have a friend who can’t take pills. Period. Various fillers they use and the materials in gelcaps give her horrible, horrible reactions. She has to fight every time she’s forced to the ER, because the first thing they want to do is give her pills. One-size-fits-all.
I sympathize with your friend; a large number of my online CFS friends are sensitive to various things – I’m sure that includes fillers for some – and can’t get the rest of the world to realize that these substances are not innocuous to all. Why in the world is Red dye #2 necessary in a BP pill? Or similar ‘unimportant’ little details.
There are liquid forms of many medicines – I’d hate to have to demand them every time.
The late great Erma Bombeck quote I remember the most is ‘”One size fits all” is an incomplete sentence.’
Given the prevalence of MY reactions to so many of these pills, my guess is not that particular sensitivity to the supposedly-inert materials in them, but to the substantive medicine component. Can’t prove any of this, but that’s my gut feeling at this point.
Had another bunch of reactions last night – now I need a nap because I did NOT get anything near the good night’s sleep I require.
Omg omg… there is a book called drug muggers. Check it out. I did a post on medicines… i might have to repost… the book is great…
Now i cant recall properly if water melon and berries are good for kidneys or liver..in terms of washing the clean of drugs… google it i am sure you will find something
Thanks – I think time and water will clear out most things, as long as the liver is still working for me. So far, I hope no long term damage by getting off them sooner rather than later. Cross fingers.
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Once upon a time, just over eight years ago, I was getting ready to have cataract surgery. The cataracts were a consequence of Uveitis (an autoimmune eye problem) which I’d had on and off (but mostly on) for two years. My specialist prescribed me oral cortisone to try to keep the inflammation at bay so the surgery could proceed.
I became psychotic, and spent over three weeks in a psychiatric ward. Oral cortisone is not my friend. My specialist apologised. He said he’d never known this to happen before.
Sensitivity rather than side effect, but it was awful. Just ask my husband.
Ack! That’s horrible. My sympathies – and your poor husband. Three weeks is a very long time to wonder if your wife is going to be herself again.
There’s always someone who responds differently, or what they call paradoxically: has the exact opposite of the desired effect.
They should be ready for an occasional surprise – my doctors didn’t seem to be. Still aren’t. ‘The God Complex.’ These things aren’t that uncommon in the literature – people like to write reports about the odd cases.
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That is just terrible. Especially the chart business. Good gravy. Now, see, I think about people who are not as quick or as sharp, and how they could end up treading water or drowning VERY quickly. It’s a good thing you’re thorough and outspoken. Damn good thing. I’m so stunned by this, I really can’t even.
I’m sure you’ll speak to your regular cardio about the E drug. I’ve no worries that you know yourself best.
So glad you’re writing 🙂
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Most people also wouldn’t have the degree of trouble with these things that I do; most people just take what they’re told – and it works for them.
Or they don’t – and don’t go back to that doctor.
I read an anecdote about a woman who didn’t take her diabetes meds, so every time she went back to the clinic, she was in worse shape – and they UP her meds again. She didn’t have the money to buy them! Nobody asked.
The Effient is OFF the table. I know what it does to me. If one of the other drugs is tolerable – like the one I just started – we’ll talk.
The first month is supposed to be critical – I’m over that. But I’ll let them do more tests, if necessary – this is serious stuff. But so is me having any kind of a life.
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Hear, hear. You gotta advocate for your own health. I’m so glad you’re with-it enough to do so.
I shudder to think of me at 87 or 90, with the same side effects, and no one to advocate for me.
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I shudder to think of all those people who aren’t able. You may never lose your sharpness.
Statistics show that of people who reach 85, half have dementia (I read somewhere). My mother and one grandmother both do/did, my dad and two grandfathers didn’t.
There are a lot of factors; keeping sharp is one of the reasons I write – and one of the reasons for the huge levels of fear this past five weeks when I often couldn’t THINK.
I know these meds are tough- even on someone who doesn’t suffer from your other medical issues and sensitivities. Hang in there. Yeah, they are important, some of the meds more so than others. Perhaps in a few months (or a year) you can eliminate them altogether.
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Thanks for the encouragement, Julia.
I’ve reached the point, though, where I really can’t take any more stuff.
I had such a tiny life before – I haven’t been able to resume almost any of it. I’m glad I didn’t have choir last Sunday – the students weren’t all back from Spring Break – because I would have had this huge reaction happen when I was out driving.
But to have someone look straight at me and LIE is extremely stressful, does NOT make me more likely to follow instructions which harm me (husband said he probably doesn’t know any other way to make patients do what he thinks they should do), and makes me distrust the NEXT thing I hear from them.
Non-compliance with ‘standard instructions’ is huge – and the doctors are all discussing how they need to MAKE the patients take their meds, not why the patients are NOT taking their meds.
If I didn’t have more sense than the average patient, I wouldn’t even stress over all the above; I’d just dump the meds the minute they gave me trouble – and take my 1% there is of them closing WITH the meds.
I am perilously close to that point. I am just trying to figure out the safest way to do it.
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