I have had paroxysmal AF for around 15 years after a few years with increased occurrence I was put on Flecainide and Bisoprolol which has (touch wood) not really given me any issues.
I still get a rare incident perhaps once a year and often goes off without reporting to A&E.
I was a bit surprised to get an NHS “at risk” letter a few weeks after everyone else.
I spoke to my GP as as far as I was aware AF was not a particular risk. The GP was slightly vague but said it was down to my medication in particular the flecanaide as it did not act well with infection.
Has anyone else heard of this? I have googled it to death and can’t find anything.
Thanks in advance.
George
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I’m not sure about taking Flecainide, but as far as I am aware, AF patients generally have not received letters from the NHS. Of course, some AF patients can have other conditions such as asthma, diabetes COPD etc etc and this may put them into a more “at risk” category. The AF Association has provided some useful information which you will find by clicking on the link below.
Hi FlapJack - thanks for the response other than the occasional AF session I don’t have any other conditions. I think I’m going to speak to another GP for a second opinion.
I was looking for them yesterday FJ and couldn’t find them. The site seems to be changing and I couldn’t find a number of articles I was looking for as I wanted to re-read them.
How interesting. Has anyone else received letters I wonder. I take flecainide, but I'm currently living in the Middle East, so wouldn't receive a letter anyway. A second opinion is sensible, probably from the cardiac professionals.
Hi George, I am 66 yo and on Flecainide and did not receive an NHS letter. I do think however with the potential of the Virus triggering a more serious episode of AF and the resultant added stress on the heart, I do think we are vulnerable and I won't be rushing out to mix with other people at the first opportunity.
I have lone PAF which was unstable quite a lot up until January 2019, stopped regular medications in July 2019. Only a handful of less symptomatic episodes since. No other medical conditions besides Renal colic, arthritis and childhood asthma.
Nothing I have is on the Public Health England "at risk" list. I've had no letter. And from a work point of view I am allowed to work, with PPE, but have no contact with suspected or known Covid-19 patients.
Yes, I also received an NHS “At risk letter” .... I take Flecaineide , but have asthma as well, but I must admit I hadn’t given my situation a lot of thought before ,as I’m sole “ minder” for my 84 yr old husband, who has 6 Cardiac stents , result of years spent as a Col in the Paras & climbing in the Himalayas . I’m a young 67( I hope) So my sole concern was keeping him safe. Our GP told us on a phone consult that we should both self isolate , at the outset, in mid March , having both had Heart monitors fitted day before, I had already planned to do so. We’re lucky we live in a fairly remote location with a few near neighbours . The biggest problem for 1st few weeks was food shopping, then eventually on-line kicked in, as I had registered my husband as “Vulnerable on YouGov site. That took about 3 weeks to kick in .... So far so good , then we got a letter saying that he wasn’t “shielded “ .....
I just give up , left hand & right hand not communicating very well .
I had a major episode of AF earlier this week, late at night , probably heat related , thank heavens I was able to email an ECG to our lovely EP , who helped me re meds .
Am trying not to think too far down the line but trying to stay fit and savour each day , otherwise I’d fall to bits
Someone else responded they were on Flecainide and had asthma but they didn’t get a letter. There seems to be a bit of inconsistency from the NHS on this.
Yes you have hit the nail on the head. The left hand does not know what the right hand is doing. We both started our lockdown in mid March - in fact were fairly wary of going to a funeral on 3 March. My wife has Asthma and 2 other lung conditions and I am nearly 77. My wife finally got her shielding letter from her consultant at the hospital on April 7th and another one about 10 to 14 days later from the same hospital - practically with the same information on but nothing done via the Welsh government or GP surgery as others seem to have had so had difficulty signing on as vulnerable for online shopping and prescription delivery. A friend of mine (who lives in Hampshire) who has severe COPD has not got a letter at all. I too have a military background (I was a Parachute Jumping Instructor (PJI) in the Royal Air Force for 29 out of my 37 years) and although sometimes things can be badly organised in the military I do sometimes look at some organisations and wonder how they manage to function at all!
This list of conditions comes from the gov.uk website. No mention of AF.
You have one of the listed medical conditions if you:
have had a solid organ transplant
have any cancer and are getting chemotherapy
have lung cancer and are getting radical radiotherapy
have cancer of the blood or bone marrow, at any stage of treatment - for example, leukaemia, lymphoma or myeloma
have any cancer for which you’re getting immunotherapy or other continuing antibody treatments
have any cancer for which you’re getting a targeted treatment which can affect the immune system - for example, protein kinase inhibitors or PARP inhibitors
have had bone marrow or stem cell transplants in the last 6 months, or are still taking immunosuppression drugs
have a severe respiratory condition - including cystic fibrosis, severe asthma or severe COPD (Chronic Obstructive Pulmonary Disease)
have a rare disease or inborn error of metabolism that significantly increases your risk of infection - for example SCID or homozygous sickle cell
are getting an immunosuppression therapy that’s sufficient to significantly increase your risk of infection
are pregnant, and have a significant congenital or acquired heart disease
According to Prof Peter Openshaw who spoke on the Andrew Marr show earlier this morning there are signs that they are modifying advice for some cancer and asthmatic patients. Clearly as knowledge of the virus increases, things will change, hopefully for the better.
Yes I agree - Things will change all the time - It’s all new to everyone the scientists are learning more about it by the hour and this is where people have to be realistic and adaptable.
It’s all about a balance we can’t stay locked down forever but we must be cautious.
A lot of people are getting hot under the collar that the advice has changed slightly for the shielded,
I think it’s great news that a small step in the right direction is being taken and we are being considered. It’s optional - if people
don’t feel safe going out for a socially distanced walk and meet a friend or relative they don’t have to.
The latest intelligence appears to discount both asthma and AF as high risk. As they learn more and more about the virus less things seem to be of concern. What is rather interesting is that black and asian origins does appear to increase risk but why that should be they haven't yet worked out. Genetics?
Let just acceptthat they don't yet know enough and be careful!
Genetics, socioeconomic factors, and vitamin D status is being . More skin pigmentation means less vitamin D is absorbed. Preliminary studies have found that people with high serum levels of vitamin D are much more likely to have a mild attack of coronavirus, people with low vit D status mostly had more severe disease. nypost.com/2020/05/01/peopl...
Preliminary studies - but research has already found vit D helps immunity with flu and other respiratory infections, so it wouldn't be too surprising if it's helpful.
very interesting. I'm the same as you are ,with PAF and am on both Flecainide and Bisoprolol daily. I am on an anticoagulant plus meds for hypertension and meds for having had breast cancer....and I haven't received any letter from NHS.
Seems it's all different. Oh, I'm in Fife in Scotland by the way nd am 65!
Thanks Blue, I’ve just been put on blood anticoagulants in the last few weeks but that is another story, I can’t see the point of that given the relative rarity of my episodes but given current situation I am happy to go along with it.
I've only been on the anticoagulant since the week of this lockdown and that's the first of me being on that. My 'episodes' are coming almost daily atm.....damned annoying to say the least. Onwards and upwards eh?
Ha it must be stress I kicked off on the 2nd April and had to go to A&E at the main hospital in Liverpool, I was serious tachycardic all day until 2am when they sent me home saying if I hadn’t caught the virus if they kept me any longer I would - I had to isolate for 2 weeks with my wife. That was when they put me on Elequis - it took me a couple of weeks to get used to it though.
As I say when it’s over I’m going to see if I need to stay on it
Hi, I have been on 50mg twice a day Flecainide and 5mg Bisoprolol once a day for about five years. I did not receive an at risk letter. I believe the GP has to notify the Government of all at risk patients so presume he thinks you are. Do you have any other conditions?
I have not had a letter, so I am puzzled you have. A second opinion is a good idea. I am on Flecainide and also blood pressure meds and have a pacemaker. High Blood pressure is a mentioned as a a co-morbidity for many in the elderly at risk category. But as Sanjay Gupta says in his video on the subject, it's not the blood pressure reading per se that causes problems, it's the damage done to heart muscle if it's left untreated. Nothing is mentioned about Flecainide.
Of course the letter will get you on the list for preferential food deliveries from the supermarket. Maybe the GP thought he was doing you a favour in that respect!
No none - I’m overweight but not massively so and pretty active and it’s years since they weighed me anyway, I very rarely go near the place it’s over 12 months since I’ve been to see the GP - I’ve also lost a couple of stone since the start of the year.
There are 2 types of letters - in the 1st few weeks the NHS identified approximately 250,000 people half of whom were sent letters within days, I received notification several days prior to lockdown. These were considered the most at risk and labelled as people who needed shielding. The lists of people sent these letters were those currently being treated at out-patient clinics. Gradually as things became more organised, other people were identified and sent letters and asked to register. I suspect this was done deliberately to stagger the response so the government website and responders weren’t overwhelmed.
NHS and GP surgeries are very different and differing organisations - they are not connected. GP surgeries were then asked to identify their own patients who were thought to be ‘at risk’. Now I suspect that without clear guidelines, GP’s have different interpretations and have actioned this directive at different rates, dependant upon their resources and their own triage list.
Although this is purely conjecture on my part, it would explain what has happened and why you have suddenly been sent a letter. When you look at NHS governance it is very complex and although most GP’s are independant businesses, financed by the NHS through area funding, very few are directly financed and run by the NHS.
The other possibility is that the guidance regarding certain medications has changed as more is leaned about the affects of COVID and your GP has picked up on this.
All I can say is that my own GP surgery were ringing me daily at one point, I was told to stay in the house, not to have blood draws for at least 12 weeks - normally every 4 weeks - and in no circumstances to go to the surgery.
Have you been told of any side effects of taking Flec long term? I've been on it for 6 months and trying to find any information about taking it long term as I'm only 39.
Hi I can’t give you a clinical view on long term use of Flecainide, but I started taking it when I was about your age and 25 years later, I’m still on it and have never had any obvious side effects. For many AF sufferers it is a good friend, but of course it will not suit everyone, and, of course I would prefer not to be on it. I am sure side effects might vary depending on the dose, but at 50mg bidaily ( my dose has varied a bit over the years) I’m still here!
If you do get an interesting reply to your question please do let us know. My doctor said quite firmly early on that I didn’t need to be on the list so I never questioned it. Best wishes.
I spoke to my GP as I take Flecainide, Bisoprolol, Warfarin and have lung damage.
He said I am vunerable mainly because of my age (73) not because of my conditions and I would not be getting a letter from the NHS.
Didn't get a letter but got a text , no idea why, I have AF and on flecainde but have a chadvasc of zero and I'm under 60, i emailed my consultant who told me to ignore it and that i had no greater risk than anybody else.
I'm on Flecainide, anticoagulants (I'm female so the CHADVAS-2 is higher for us women) and Tildiem for hypertension. No letter here - I'm in Wales so might make a difference. I vague recall that when the virus kicked in over here, there were concerns about sodium channel blockers (which is how Flecainide works) and the virus potentially taking hold. If you look on Sanjay Gupta's YouTube channel I think he discusses this there.
Delighted to read that Bob has been on this drug for 15 years with no issues. It works far better for me than Bisoprolol. Much happier on it even though the drug itself is potentially more dangerous if misused.
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