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?