I'm new here and struggling

[HettieHen]

Hi everyone. I'm 55 and newly diagnosed with persistent AF. I have been put on 5mg apixaban 2 x daily and 2.5mg Bisoprolol 1 x daily and await my first in-person consult with the cardio dept later this month and am told I am likely to be on the list for a cardioversion. I had been taking the Bisop in the mornings but around lunchtime become overwhelmingly tired and have to sleep, waking up an hour later feeling pretty dreadful and wanting to eat too much sweet stuff, which then itself makes me feel ill. I have now moved to taking the Bisop at night, but I am still keeling over in the afternoon but hoping it will improve. I'm assuming its the Bisop rather than the condition, but not entirely sure. I'm becoming very worried about managing work etc (Im freelance and need to be on the ball).

I am also having random intense pains, first in my upper back (MRI scan found nothing) and now in the front of my thigh. Not sure if it is all related.

I will try to read back through this community's discussions to see what I can learn from it. It's a new and rather worrying world for me and definitely a case of treatment making me feel worse than the condition, however with a family history of blood clots and PE it's not one I can ignore.

[Desanthony]

Sorry to hear that you have been diagnosed with persistent AF and that you don't seem to be getting along with the medication. I never managed to get on with bisoprolol or other medication of this type and ended up on just the Apixaban. However, I was a lot older than you, nearly 20 years older in fact when I was first diagnosed. I have been lucky and had 3 successful cardioversions (CV) for my my persistent AF - the last of which is still keeping me in Normal Sinus Rhythm (NSR) since February - the first CV kept me in NSR for just short of a year - the second for only a matter of months which I put down to having a total knee replacement operation and the gruelling physio involved during that time. This third CV as I said is still working and I am on the list for a cardio ablation - should have had that in April but of course lockdown got in the way. If you can get to see one then do see an Electrophysiologist who deals with the electrical side of the heart rather than the "plumbing side" - possibly you will see one at the consultation you already have booked. When you get to your appointment ask about the bisoprolol as maybe a change in dosage or a change of medication might help. I hope everything goes well for you.

[HettieHen in reply to Desanthony]

Thank you so much for your reply. I am taking it all on board and good to know Im not alone.

[jeanjeannie50]

Hi Hettie and welcome to the forum.

If I were you I would have a chat with your GP tomorrow, about the effects of the bisoprolol and see what he suggests, he may reduce the dose slightly. Do you have a machine to test your blood pressure and pulse, because the drug could be taking them both down too low?

Make sure you drink plenty of fluids (water is best) throughout the day as lack of these can make you feel drained.

Please let us know how you get on.

Jean

[HettieHen in reply to jeanjeannie50]

Thank you so much for your reply. I am taking it all on board and good to know Im not alone.

[Hidden]

Hello Hettie and welcome to the place you would rather not be. From what you have said, it sounds as if you are on the correct treatment plan for someone diagnosed with persistent AF. It is good that you are taking an anticoagulant as this will provide significant protection against the risk of having a stroke which unfortunately, is associated with AF. Bisoprolol is nearly always the first beta blocker prescribed as it is very effective at controlling heart rate and bringing it down to somewhere below 100 beats per minute. It often takes time for the body to adjust to this drug and the side effects can initially be unpleasant, bringing symptoms often not too dissimilar to the AF itself. It needs to be given a chance to settle, but if it doesn’t, there are alternatives which you can discuss with your cardiologist. Your GP may be reluctant to offer alternatives unless prompted by your cardiologist. The cardioversion is important as it will determine whether or not your heart can be returned to NSR (normal sinus rhythm) and if so, whether or not you feel better in NSR which most do. Cardioversions are not a cure, but they can work for hours, often days, weeks, months and even years. What is important is that if it works, even if it’s only for a short period and you feel better, you are more likely to respond to other forms of treatment, such as an ablation.

At the moment, I suggest you find out as much as you can about AF and one of the easiest things to do is click on the Pinned Post to the right of this page headed “Useful Links for Newbies and Oldies”. Just follow the links to all the AF Association webpages and other areas offering useful information....

[HettieHen in reply to Hidden]

Thank you so much for your reply. I am taking it all on board and good to know Im not alone. I have started working my way through the info you mentioned.

[Tapanac]

Hello and welcome, but I’m sure you would rather not be here like all of us. Although we are not medical and only share our experiences of this Afib/flutter beast, it is a helpful forum.

Regarding bisoprolol, I have seen on here many people who have problems with it and have changed to nebivolol and have had really good results with it. I would change myself as I have found that I think it makes me lethargic, weight gain, etc, but I’ve been on it for a few years so I’m not sure if it is that or what.

I do hope you feel better, but being diagnosed with Afib especially permanent Afib can be tiring both mentally and physically.

Perhaps see your EP or GP and perhaps change your betablocker.

All the best

[HettieHen in reply to Tapanac]

Thank you so much for your reply. I am taking it all on board and good to know Im not alone.

[momist]

They tried putting me on 2.5mg bisoprolol right at the beginning of my AF journey. I called the GP after one day to say I couldn't get up the stairs in one climb and had to stop to rest and get my breath back. He immediately halved the dose, and I've been taking 1.25mg tablets ever since then.

Once my body adjusted to that, my EP insisted that I needed more and he told increased the dose to 1.25mg twice a day, morning and night. The night time dose is near enough to bed time to not bother me. I've been on that dose now for quite a long time. Everyone seems to tolerate it differently, if at all.

A word of warning. The Apixaban can induce itching in unexpected places as a side effect. Mine is just under the right shoulder blade where I can't get to scratch it! I've learned to live with that. Not everyone gets this of course, and I prefer to put up with that than go onto Warfarin and have to have blood tests every few days.

[Auriculaire in reply to momist]

A back scratcher that adjusts to various lengths works a treat! I have one that at it's minimum will fit in a small toilet bag . Interesting about the itch. Mine is under the left shoulder blade. I have never connected it to Apixaban before!

[HettieHen in reply to momist]

Thanks for the reply and will look out for the itch!

[Funky_Uk]

Hi... I’m 51 and have been on bisoprolol 2.5 mg for around 6 months due to a few episodes of SVT and AF. My blood pressure and heart rate went very low and I felt terrible on the tablets. They then put me on 1.25 in a morning and 1.25 at night which was better though I do get very tired a lot and breathless most days which I’m sure must be down to the bisoprolol. I see my cardiologist next week will see what they say. I have a pacemaker so my heart rate can’t go too far down without being regulated. Hope you get some answers soon its scary especially during a pandemic when you can’t get so see anyone quickly and appts have had to be cancelled x

[HettieHen in reply to Funky_Uk]

Thank you so much for your reply. Good luck with your appt next week.

[Dodie117]

Make sure you are seeing an electrophysiologist as opposed to a general cardiologist. Ask to be referred if necessary. Ask about ablation. I had my one and only in 2013 and still no AF. You are young (in AF terms!!) and most of the literature says the earlier you have it the better the results. Check heart rate to see how low it is going. Bisoprolol is not suitable for people with low heart rates. Go to main website heartrhythmalliance.org and arm yourself with information before your cardio appointment.

Good luck 🍀

[HettieHen in reply to Dodie117]

Thanks for your reply. Im not sure how I get referred on but will suss things out once I actually get to the clinic.

[Dodie117]

Indeed and it’s early days and will get easier.