Anyone have severe reaction to AF medications???

[ShimmeringLillyMae]

Hi guys! I have asked this in other posts I'm sure but I really need to rule out that the medication is causing me to physically be so sick I cannot function, my cardiologist will not stop the medication nor change it and I'm getting desperate... Please let me know if any of you have had a problem with flecainide, diltiazem, & eliquis and what were your symptoms.. I'm sick enough to go to the ER but I know they will tell me to go home since all test results are good.. thank you in advance for your replies 😊

[BobD Volunteer]

Diltiazem I only ever took one pill. Thought I was dying---and wanted to! Fortunately can't remember how it felt. We are all different!

[sleeksheep]

Flecainide made me nauseous untill I went with a lower dose to get my body used to it before resuming the full dose ( 50mg x 2 ). Even now I have to have a 30 minute break between Flecainide and Diltiazem or I would get nauseous. No problems now by separating them.

[CDreamer]

Yes - I think I told you in a previous post that I developed Myasthenia - an autoimmune disease which was exacerbated by the heart meds I was taking and the sedatives I received during an ablation. These heart meds - Flecainide & Bisoprolol in particular made me really ill, although they probably didn’t cause the Myasthenia.

My suggestion - change your doctor and find someone who listens and will work with you in a more sympathetic, empathic and holistic manner.

I really do sympathise - it’s horrible when someone refuses to listen and you are the best expert on you.

Best wishes CD

[ShimmeringLillyMae in reply to CDreamer]

My mom has myasthenia and I'm being sent to a rheumatologist on the 1st of next month to be tested for that and other possible autoimmune diseases. thank you all for all the advice and listening, it's so much appreciated 💓

[Hidden in reply to CDreamer]

I've had problems with the drugs though not as bad as your experience! A daily dose of the lowest Bisoprolol brought my heart rate down too low so told to stop taking it but nothing suggested to replace it! I went privately to get Flecainide to take as PIP with added Bisoprolol if heart rate high. It works and episodes rarely last longer than 2 and a quarter hours though they are happening more frequently now. I tried taking flecanide twice a day but it failed to prevent episodes so I stopped that. I wish they would treat us as individuals as we are so obviously all different. Good luck with finding what might work for you without making you ill.

[CDreamer]

So right!

[CDreamer]

I think that you may find this particular section of the guidance (which is under review by the way) applies for you.

7

The exchange of information between doctor and patient is central to good decision-making. How much information you share with patients will vary, depending on their individual circumstances. You should tailor your approach to discussions with patients according to:

their needs, wishes and priorities

their level of knowledge about, and understanding of, their condition, prognosis and the treatment options

the nature of their condition

the complexity of the treatment, and

the nature and level of risk associated with the investigation or treatment.

8

You should not make assumptions about:

the information a patient might want or need

the clinical or other factors a patient might consider significant, or

a patient’s level of knowledge or understanding of what is proposed.

9

You must give patients the information they want or need about:

the diagnosis and prognosis

any uncertainties about the diagnosis or prognosis, including options for further investigations

options for treating or managing the condition, including the option not to treat

the purpose of any proposed investigation or treatment and what it will involve

the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care

whether a proposed investigation or treatment is part of a research programme or is an innovative treatment designed specifically for their benefit4

the people who will be mainly responsible for and involved in their care, what their roles are, and to what extent students may be involved

their right to refuse to take part in teaching or research

their right to seek a second opinion

any bills they will have to pay

any conflicts of interest that you, or your organisation, may have

any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.

[Buffafly]

Hi, I saw that your doc and cardiologist both think you have an underlying condition which hasn't been diagnosed yet. You also said you believe you had the episodes of fast HR sometimes before the episode that took you to the ER. If you felt well before taking the meds and obviously didn't die from the heart problem then I am going to tell you (but not of course advise you 😜) that other people in your position have simply stopped the meds, though of course then you'd be in trouble if you chose to go to the ER again! Never stop the anticoagulant though!!! especially if you did stop your other meds. I can't remember if you said what your HR is, I was wondering if the flecainide could have caused flutter but I guess your GP would have picked that up. If you began to feel better after a few days you'd know the cause of your exhaustion, if not your doc should be trying much much harder!

[Mugster]

People generally haven't reported any side effects with Eliquis

[Maagaa]

Hi Lilly forget the GP and Cardiologist you need to see an Electrophysiologist. When diagnosed with AFIB he or she will give you proper meds not to worry you will be feeling better in no time

[Hidden in reply to Maagaa]

If only you could get to see one- almost two years since my diagnosis and it doesn't seem possible unless one goes privately and even that isn't easy! Just what we need when we are supposed to be avoiding further stress! Good luck in the struggle!

[Cavalierrubie]

Hello Just found this post from you. It was nine months ago so how are you now? I was the same. It is 9 months since I was diagnosed and eventually after much sickness I am just taking Warfarin and Bisoprolol as PIP. I still feel quite ill some days but the Warfarin is better than the two anticoagulants I have tried. Eliquis and Apixaban. Betablockers make my blood pressure go too low, so can't take them all the time. I get AF about once every two or three months. I am not the energetic person I was, and I know its the Warfarin that my body seems to be rejecting, but have to take it and we have no option. I hope you have managed to sort your medication out and find what suits you. Would be very interested to hear your story, and hope you are feeling better.