[Closed] Dangerous medication, long term?

Ton, you need to give us more context. How toxic ? What is your long term prognosis ? Do you have family to help you decide ? Does the medication vastly improve your quality of life ?

Stay on it - not an option really.

For me at this point in life with dependents Id stay on it

Curious what the risk is, thought the cold steel had sorted you big fella?

I thought you were all sorted after your last procedure, Ton 🙁

There aren't that many really dangerous drugs - have the risks of whatever it is been explained to you ?

Regardless, ask your doc; he or she knows your condition and history way better than stw does

If you stop it and then relapse, can they restart and return you to your current state or would you be worse somehow ?

It's a difficult question, Ton, and TBH one that only you can answer.

I know I'm not in a position where I will have to stick on these patches for the rest of my life. Either that or develop osteoporosis, amongst other fun issues. They do, however, increase my chance of developing certain cancers. What a lovely choice!! 🙂

I find it easy to make the decision, though - keep with the patches and enjoy being a crazy cat lady..

Rachel

In what way is the medication dangerous? Of course all medicines have risk, but what is it about the drug that is bothering you?

It's easy for those not in a similar situation to say stay on it and insinuate you are daft for even thinking of the alternative.

However I have been on ticker medication for the last (nearly) 5 years and sometimes it isn't too good.

For me I came off statins after 12 months as I simply couldn't exercise properly and felt frankly poop all the time. Still on beta blockers, ace inhibitor and aspirin, and don't really like them but am prepared to stay with it for now.

At 43 I don't want to be a drone to medication and can certainly see Tons thought process if they are altering his life that much.

What drugs and what doses are you on Ton if I may ask?

Drugs get licensed based on risk-benefit ratio, i.e. if it has nasty side-effects it has to be doing something pretty special to get approved. If your doctor thinks the benefits to you are worth the risks you should understand why he thinks that before taking any decision. As usual on these threads - go talk to the doctor and if you don't like what he/she says get a second opinion (from another doctor not from the internet). And good luck, I hope you find a solution you can live with.

EDIT: unpleasant side effects doesn't equal dangerous and toxic - both things to be avoided but they're not the same [/pedant]

went to see my consultant at LGI on saturday. he told me that even the the surgery had been a success, the heart drug i am still on could be possibly the reason my heart was in sinus rhythm.
he told me that when i come off the drug that there was a 50/50 chance that my heart could revert into af.
i was not told this prior to going for surgery. and i feel proper gutted now, hoping that i get a bit of luck and keep well.
he told me that it was not advisable to stay on the drug long term.
and after reading about the drug i can see why. the drug is amiodarone.

EDIT: after seeing your recnet post - definitely way to complicated for us to give you any advice there Ton.

Jeeze.

Wow, can see while you feel so fed up about it. I too came off statins as they were making me feel so poorly and stopped me from riding like I knew I could before I started on them. I'm just waiting for the results of my bloods having been off them for about five months with gingers crossed bug determined any other medication rather than statins although all medications have side effects.
The risk for me is significant raise in risk of stroke or heat attack but with them quality of life and exercise was so poor. The difference for me of course is that if I really have no choice and ultimately could die imminently then of course I would have to bite the bullet and go back on them.
In reality unless there is other medication that you can explore in conjunction with your medical experts to try it will be a massive decision for you to make and live with but I wish you the best in whatever you decide.

you don't sound like you're getting great quality information if you're finding out things now that you could/should have been told before the surgery. Keep asking questions of them, especially if you don't like the answers. Unfortunately medicine isn't an exact science and even the best doctors can't know everything. Does sound like time for an open discussion and maybe that second opinion though...

twonks - Member
It's easy for those not in a similar situation to say stay on it and insinuate you are daft for even thinking of the alternative.

Just to balance my post - 25yrs of medication after a serious accident that actually killed me three times and whilst I can come off the meds - its never for long.
The risks of the meds aren't enough to mean I can't function, move, walk, etc.

A very difficult question to answer. Amiodarone does have some potentially serious side effects with long-term use, but not everyone will get those side effects. If you're concerned about side effects, or the long-term risks, I would discuss with the doctor. Are there any alternative meds that you could take in the event of this drug being intolerable?

I personally would ask for another quick appointment with your consultant specifically to run-through his/her thoughts on the risk vs benefit of the drug in your specific circumstances.

I think you've got to have trust in your Doctor, frankly they're terrible at communicating but do tend to consider all the variables when prescribing and go for the 'greater good'.

to be honest, he has been very good all the way through, so what he say's goes. he has tried from the start to tailor my treatment so that i can keep cycling, which i have managed for the last 5 yrs.

fingers crossed eh?

can always buy a ebike and upset a few on here i suppose....... 😆

Amiodarone is difficult. Some of the side effects are trivial, some very common but manageable and at least one potentially fatal.

In the last few years we have moved away a bit from it because in survival terms a rate control (roughly normal heart rate) is as good or better than a rhythm control strategy ( regular heartbeat, which we use amiod for). But if you are athletically active or find being in AF uncomfortable there isn't much better than amiod. And I've seen how disappointed people get if they go back into AF after ablations etc...

I'd guess that 75% of people have no problems on it. But it is probably one of the more toxic drugs I prescribe.

Does your chap have a view on dronedarone? less toxic but less effective.

I think you're young enough for your AF stroke prediction scores to be low if you went back into AF? Do you know your CHADS2VASC score?

stoatsbrother, i dont.
my op was to have my left atrial appendage removed, to lessen my stroke risk.
he then opened my chest to do a full cox maize procudure. it worked, but i come of amiodarone in 2 days. i see the cosultant again in 8 week to see if i have reverted.
i will ask him about dronedarone.

ust to balance my post - 25yrs of medication after a serious accident that actually killed me three times and whilst I can come off the meds - its never for long.
The risks of the meds aren't enough to mean I can't function, move, walk, etc.

At the risk of sounding rude Hammy, what happened? Head injury followed by seizures?

🙁

Hi Ton,
Although I'm a medic (paediatrician) I don't think I can give any useful medical advice here. But as a patient on a few scary medicines myself i can totally understand and empathise. The dilemma of maintaining good control vs risk of serious side effects is horrible. For me, it's scary immunosuppressives to control Crohn's disease with a small risk of serious infection or some rare and serious cancers amongst other things.
At work I spend lots of time taking patients through this and explaining risks and benefits which all make sense but turn the situation round and I find it very difficult. Things that help are having supportive family members and friends who are good at listening when I'm fed up and grumpy. Getting good information.from the right experts is crucial in making the best choice you can in difficult circumstances.
If you can only find out whether you can cope with coming off the amiodarone by coming off it, it sounds like that's worth a go. Do they think the amiodarone would be effective again if it needs to be restarted? It's always worth asking what other options are available - even if it's just to confirm that you're making the right decision in choosing something with potential problems.
Hope it all works out for you, it sounds like you've had a tough time.

Couldn't even dream of answering that. But good luck to you either way.

I can understand your worries but sounds like you are in really good hands. I've no idea about how soon you'd stop after a Maze, only seen one patient with one. I guess they have to find if it has worked. I suspect dronedarone wouldn't be high on their list.

Interesting to hear you've had your appendage done. Getting some innovative stuff done... Should make your CHADS2VaSC irrelevant. Cool.

Do you take horrible medicine, which may make you worse?

Do you stop taking horrible medicine, which may make you worse?

Which is most likely to make you better?

I've just spent ten minutes on this thread agonising over this question for, well, reasons which are beyond the scope of this forum.

Best I can do is, Ton, if our paths ever cross I promise I will buy you a pint.

I've a similar long term dilemma with my Leukaemia.
The drug I'm on has long term toxicity issues (Heart, Bone problems amongst others)

For the moment I need to stick with them as it's early days and need to get healthy and into remission first, but then the question's there for me too.

I'm not agonising over it now as it's a good few years away for me, but it's there niggling away in the back of my mind.

Fingers crossed some other options or a cure comes out of stem cell research or something before the decision has to be made.

IMHO you need to talk to the Dr's and your family about the risks of each and likely outcomes and just go with your gut. Do you have some kind of "key worker" or support person\contact from the Hospital. I've got a specific Nurse to contact who's a specialist in my condition for help\support. We've met but I've not used her yet but I will.

Good Luck Ton

cougar, a few pints would be ace mate.

Keith, your in a bit more serious situation to me mate. my life ending risks have hopefully been removed now. it will only effect how I can stay active in the future.

I wish you all the luck in the world mate.

Cheers Ton, but my condition's not perhaps a serious as it sounds. Prognosis is very good, I caught it early because I'm fit and noticed things that many wouldn't have as soon, and it's a chronic condition so I'm expecting a long, and once it's under control pretty normal life, I hope. Just with regular monitoring to check it doesn't progress to a more advanced stage, fingers cross it doesn't ever, the Drugs I'm on do that in the majority of cases.

A number of studies are happening to test if once in a full remission if people can come off the drugs to avoid the long term toxic affects.

Tom - RTA that saw only myself and one other survive.
Easier to say what I didn't break.
I'm lucky in that I'm not even supposed to be here let alone walking/talking/working.
My meds are pain based and to keep nerve damage under control although recently degradation is showing so I get to have lots of needles stuck in me with electricity being passed down them...
Ok when it's your arms..not so nice when it's in C1 downwards...

day 1 without drugs.......fingers crossed. 😀