What does my cardiologist mean?

[Desanthony]

Saw my new EP this afternoon and he gave me a copy of a letter from my cardiologist saying that we were reverting to the rare treatment of digoxin and apixaban? Is that rare? It will be for me because I am not taking the digoxin and my new EP is absolutely happy with that but it seems an odd thing to say because it was the first course of treatment she put me on when I first saw her 4 years ago. Maybe she just phrased it incorrectly or maybe her spell check came up with rare instead of another word?

[CDreamer]

Hi Desanthony - I think that is a question only your cardiologist can answer so would write her a letter stating your understanding of where you are now which seems to differ from her understanding and could she please explain the reference to the Digoxin and Apixaban? Or ask your GP to write and clarify.

I have had so much incorrect information written in letters To/From Consultant/GP either through mistakes or misunderstandings - which is why I now file every copy of every letter and if I can get them - test results.

Best wishes CD

[CDreamer]

PS: as to whether or not Digoxin is ‘rare’ then from what I can gather it is being prescribed more frequently nowadays but it did seem to drop out of general use for a good while.

[BobD Volunteer]

As CD has said Digoxin was a common drug used to slow the heart but fell out of favour some years ago except for people with sedentary life styles I think. (Maybe I'm thinking of another drug there) . Of late I have seen more use of it.

[Hidden in reply to BobD]

That’s certainly my understanding…..

[wilsond]

Interesting. My best friend also has PAF and although we live in the same NHS trust area,I'm under an EP and she a Cardiologist.

She is on Dixogin,Apixaban and Bisoprolol

I'm on Flecanide,Apixaban and Bisoprolol

Bith fir some years now. As far as the possibility of a sedentary lifestyle favouring digixin prescribing that also seems odd,as she was until last week working full time in a very busy kitchen,whereas I've been medically retired for several years.

Perhaps you might contact the relevant secretary and ask fir an explanation?

I'm sure it will be ok but to reassure yourself.xx

[Desanthony]

Yes my understanding is that digoxin was used for people with sedentary lifestyles - which I do not have and at 125 dosage have a bad reaction to as I do to other rate control drugs such as bisoprolol at any dosage and verapamil and another two medications which were tried back in 2017. Which is why on discussion with my GP I am not even going to try low dose digoxin as nearly 3 years ago I was only on it for about 3 weeks before my first cardioversion and the GP hasn't put me back on it since even though I have twice gone back into AF. I didn't get a reaction to the lower dose but didn't usually get a reaction until 3 - 4 weeks after commencement of drug routine. So GP - new young lady who took lots of time to explain things to me and handed me letters from old cardiologist referencing this. As follows. "We will then move forward with our rare controlled strategy and I would suggest commencing digoxin at the initial dose of 125mcg od. As I never received information in this format just told over the phone in a hurried 5 min telephone call we will put you back on rate control drugs at usual dose - what was the last one you were on - told her digoxin and just as she put the phone down said right Ill do a prescription for digoxin 125 . I tried to say hang on I don't really want to be put back on any rate control and certainly not 125 digoxin which I know doesn't agree with me (and actually you should too) but it was, as I said about 4 ish on a Friday and by the time I called back no one at the office. Since that day in July I have been trying to contact her secretary but either engaged or no reply. Same with the EP and have e mailed his secretary but still have not had a reply. Which is why I asked for a second opinion which I have managed to get quicker than an answer to a phone call or e mail. I know they are busy but yesterday in one of the letters the new EP printed off for me it said they would review in September - now had I known that I would probably have just waited until September when I get the usual phone call from the cardio nurse when I would tell her I am not taking rate control medication because my rate is well controlled - funnily enough something the cardiologist mentioned right at the start of her letter so why do I need it when it makes me feel worse than the AF and lowers my resting heart rate to 40 - the lowest being 38 but I was told in A&E it's OK that's not dangerous - even though I couldn't even raise myself off the bed! I also asked for all copies of letters and test results to be sent to me and was waiting for these 3 letters - yes I know they are busy but you just can't get in touch with them. I am still waiting for a call back from the cardio nurse who actually deals with me. As she was working from home and the nurse at the hospital - well I presume she was at the hospital said she would get in touch and ask her to phone me. To cap it all I put a repeat prescription in 2 days ago and asked for it not to be delivered I would collect it as we would be out today and guess what we get back and yes little note through the door saying my repeat prescription is at the pharmacy as they tried to deliver and couldn't - well that figures because that's what I told you on Tuesday! I am glad the EP wasn't ever pushing the ablation but I feel the cardiologist was drug pushing.

Just going to pour myself a large glass of wine and relax.

[CDreamer in reply to Desanthony]

OMG - it’s enough to give you AF! Unfortunately - not really surprised. When you get a good one that listens - nurture them and ignore all the others.

[Singwell in reply to Desanthony]

That's a mess! You're doing all the right things by digging and questioning. Is it worth contacting patient liaison at your hospital, logging dates and gist of conflicting information from each slot or letter etc? I think I might be putting this all on record now and calling them to task.

[Mugsy15 in reply to Desanthony]

It's pretty obvious that 'rate' has been typed as 'rare'. The 't' and 'r' keys are adjacent on the keyboard.

[Desanthony in reply to Mugsy15]

Of course! Makes sense now. LOL! THANK YOU!

[queseyo in reply to Mugsy15]

I think that is correct, spelling check has to be double-checked by a “human’s eye”. 👍

[Desanthony in reply to queseyo]

Yes, I once sent out a short memo about the appointment of a party-time teacher instead of part-time teacher. Caused a lot of excitement and amusement in our gymnasium. LOL

[Alldone in reply to Desanthony]

Hi

I have never ever done this before in my life and really don't think we should have to given that we already pay through our taxes, but I went for a private consultation and its been the best money I have ever spent. I had my ablation procedure completed by the EP that I saw privately but done by the NHS. Somehow when you are paying for that 20 mins you feel that you have every right to ask every question that you want to however crazy and 20 mins is much longer than you think.

I hate that I had to do it but after every NHS appoint I left with more questions that answers.

[Desanthony in reply to Alldone]

Yes, I know but they also spend more time explaining to you as well and don't appear - though they may well be, in a rush or preoccupied with either the previous or next patient and shuffling papers on their desks - people popping in and out with questions and so on. Everything seems much more measured and relaxed. I was examined and had all measurements taken by the consultant and still managed to get everything done in about 25 mins whereas with NHS consultants the nurse has already done all the measurements but you still don't get the same sort of experience - I wonder what it is? it should be better with NHS as all the nif naf of taking pulse etc has already been done but it isn't. Unfortunately I can't be referred by my GP to an NHS EP I have to go through my cardiologist as the EP is out of area so NHS Wales doesn't let that happen so had to pay for a private consultation first. Waited quite a while for appointment because obviously the EP in the next NHS area to us gets everyone from both his NHS Authority and ours and I dare say most of the people from our area go private in the first instance and then go onto his NHS list! Usually when I make a private appointment i wait a week at most but for the EP it was over a month.

[Stentrunner in reply to Desanthony]

Rate control strategy

[Desanthony in reply to Stentrunner]

Yes I know Mugsy 15 pointed that out above. Thanks

[Janith in reply to Desanthony]

Wine is a trigger … better watch out!

[Desanthony in reply to Janith]

I am in permanent low rate AF so what is a trigger for me? When going into AF after my 3 successful cardioversions it was lifting awkward/heavy weights that put me back into AF no problems with caffeine or wine or anything else.

[Janith in reply to Desanthony]

Lucky you!

[Desanthony in reply to Janith]

Yes that's what I thought but I rarely drink caffein because I have to avoid it because of bladder problems so only drink caffeinated tea or coffee when i am out or visiting someone - so that hasn't really happened for the last 18+months. I can't tell you the last time I drank beer - probably 2 years ago when my trade association had a series of special bottled real ales made for us and we bought them to add funds to our benevolent fund. Wine well half a glass a few times a week. The odd whiskey and gin. It has always been thus I am not a drinker - my drug of choice is exercise.

[Janith in reply to Desanthony]

Exactly! It’s amazing what a high exercise gives us. I went cold turkey about a year ago and l really don’t miss it. I do miss my martinis tho!

[smn100]

Digoxin is classed as an old fashioned treatment and I've been on it forx10 years with a concoction of bisoprolol adizem ramipril and rivaroxaban.These drugs suit me but they certainly wouldn't suit alit of people.

It's trial and error with medication

I do not have a sedentary life style and work full time.

Just keep asking them the questions.

My AF is permanent and I've not been in not for about 8 years

[Desanthony in reply to smn100]

Yes my AF will be described as permanent now too - persistent before. I have good BP and pulse except when on rate control drugs - infact low and slow with average resting rates of 50 - 53 and only once in the last month - despite going to the gym, has my pulse gone over 120 when it spiked at 148 for a few seconds when we were out for a walk and we were just a few yards from the house on the lane and had to rush as needed the loo. Otherwise spikes at 120 and under when at the gym which is why the new EP has said I don't really need rate control unless it starts going higher and higher when he will probably suggest a pacemaker.

[Ppiman]

I think it was an error. I had this and... it worked well!

Steve

[Desanthony in reply to Ppiman]

You are on digoxin `125 Steve? I couldn't get on with it.

[Ppiman in reply to Desanthony]

Hi. It was the only drug that brought my tachycardia (associated with atrial flutter) down from 150 or so. It was a kind contributor here who mentioned its success for them, and I am ever grateful for their advice. Bisoprolol, even at 10mg wasn't successful, but digoxin did the trick, thank goodness. I can't say it made me feel great, though, but certainly somewhat better. The whole experience of atrial flutter and tachycardia was beyond awful for me. In truth, I think I was unable to untangle the physical from the emotional, if you see what I mean, but a lower heart rate relieved a lot of the anxiety I was feeling.

I don't think digoxin is an "old fashioned" drug, myself, just "older". Many drugs - morphine is another - have been around for many years but remain entirely useful. Coming from a herbal source, digoxin is one of the oldest, for sure, but modern formulations make it safer.

Steve

[Desanthony in reply to Ppiman]

Yes old is probably a better description for digoxin. I am glad you found something that worked. To be honest I feel better without rate control so didn't really want to be put back on but with the insistence from the old EP and cardiologist thought it was necessary so glad to find out that with my low resting heart rate of 50 to 53 and never really getting my rate above 120 even when exercising I am hoping that this will surfice for the forseeable future I generally just bob around in the 60's when doing normal things but it does go up quickly when I move it's amazing to see that just getting out of bed puts it up to 110 - mind I am always desperate to get out to go to the loo so that's probably why, with the two things at once and I have to rush! I have always joked that I would pop my clogs around something to do with the loo!

[Ppiman in reply to Desanthony]

Well, much the same here. I’ve been on antibiotics this last week and they seem to have made my bladder yet more sensitive. It’s so frustrating.

I get spikes of fast heart rate, with some days worse than others. It leaves me feeling washed out but I’m still pretty sure mind over matter is the key but I’m not too good at that being a proper worrier!

Steve

[Desanthony in reply to Ppiman]

Yes it is just the odd spike - sometimes when I first get up though when I get up to go to the loo in the night it doesn't happen just when I am actually getting up first thing and then that odd time when I put a dash on to get back to the house - found out to do not to use the stair machine in the gym as that takes it up too but it soon goes back down.

[bassets]

Hope you can get this maze sorted out soon. Best wishes.

[Desanthony]

Thanks to Mugsy15 I realise it is not rare but rate. Should have realised.LOL

[Spinners]

Wondered if it is meant to say rate treatment? The r and the t are next to each other on the keyboard.

[Desanthony in reply to Spinners]

Yes it does I believe. Mugsy15 pointed that all out to me. Another good thing was that I will be reviewed by cardio nurse in September - I didn't know that as was not told and wouldn't have known if EP hadn't shown me these letters - though they should have been forwarded to me as I asked them to do so. Now will write to cardiologist explaining all that has transpired and look forward to hopefully seeing the cardiac nurse in person this time - have had 3 telephone consultations with them over the time of the pandemic and its not really that good one call she had to keep calling back and using different numbers because she couldn't hear me and then when she called on her landline I couldn't hear her very well even with phone on speaker phone. So definitely going to ask if they would mind a face to face for me this time.

[DoodyToot]

I was on 1000mcg OD of digoxin since 1996 when first diagnosed with permanent AF. I had no problems at all, and had three monthly blood tests to ensure that it was within the therapeutic range. In the early days I played Rugby at a high level and exercised with no real problems. This was a very high dose due to the efficiency of my kidneys excreting waste quickly. In 2019 at 58yrs I had a mild heart attack and a double CABG. The post op medication was several, but digoxin was replaced with bisoprolol to control the AF rate. I have been breathless on quick exertion post op, and was recently changed to verapamil to see if this improved my breathing. It didn’t, but I have had no adverse reaction to either of the alternative rate control drugs. I would like to go back to digoxin to see if that helps. My Cardioligist in Oxford, who is well renowned in arrhythmia, tells me that medication is like cookery and that some trial and error is necessary. Digoxin is excellent to control the resting heart rate, but poor during exertion, and which is more problematic as we get older and the risk of clot increases. Verapamil and Bisoprolol are good at controlling the rate on exertion. Hope that this helps.

[Desanthony in reply to DoodyToot]

Yes been through all that I have a low rate anyway with resting heart rate without any rate medication at around 50 to 53. When just doing normal things around the house and garden rate bobs around between 60 and 100 and generally goes up to 120 for short periods when I exercise in the gym with occasional peaks at 148 recently - probably due to taking digoxin as this has never happened before so glad new EP told me to stop taking it. I am looking for this to change and go back to sticking at 120 on exercise now without any rate control medication.