Managing Lupus and Atrial Fibrillation does anyone have the two conditions and how do you manage?

[JulieP1]

Hi all, I just wondered if any of you have AF as well as Lupus? I am a bit unsure of whats going on with me at the moment and could really do with some advice.

I was diagnosed with SLE 12 months ago, after gaining the butterfly rash, joint pains, swelling, fatigue and feeling a bit down. I was just monitored at first, and told to use Ibuprofen and sunscrean. I was okay for a while, until October 12 when I developed severe chest pains, fatigue and shortness of breath. I went to the GP and he diagnosed inflamation of the chest wall, he told me to rest. I felt really ill and was off for 2 weeks. I was then prescribed hydroxychloroquine by my rheumatologist in Novemeber 12. I continued to feel rough for a couple of months but by Febuary 13, I noticed a real change. I felt a lot better I would have a flare roughly once a month (rash, joint pain, chest pain) but just pain managed it. My rheumatologist was pleased that I had responded to the medication and said that I should keep a diary, as he believed my monthly flares were linked to my hormones.

However, by April time I started noticing that my heart would race really fast for no reason and that I couldn't catch my breath, then it would settle down. I put it down to the inflamation as I would often get chest pains. A few weeks later I felt the chest pains come on in the morning, so took some painkillers as normal but they persisted. They didn't ease off and my heart was racing whilst I was at work. I went to lie down to see if it would pass but the chest pain, fast heart rate and shortness of breath persisted. I started to vomit and the room started spinning. My collegues called 999 as it was scaring them, they took me to CCU. I was told I had AF and my heart rate at one point had gone up to 300 beats per minute. I was given medication and it settled, I was discharged with beta blockers and told to rest. I was told that I would have a follow up appt with the cardiologist in two months. I went home and rested for 2 weeks as I had fatigue, shortness of breath on excertion, and kept having AF episodes. The GP said that my symptons could be due to the beta blockers, and by body getting used to them. I went back to work on light duties and reduced hours due to the shortness of breath and fatigue.

I saw the cardiologist last Tuesday and updated him that I was still getting weekly AF episodes but my main concern was the shortness of breath and fatigue. With two young children and being a young active person it was getting me down. The cardiologist said that they would try me on flecainide as this didn't have as many side effects. I dont think the flecainide agreed, I had been on it for 2 days and I felt a bit confussed, anxious and had insomnia. On the Thursday morning my heart started racing again, I was vomiting the room started spinning. My hubbie called 999 when the paramedics got to me I was tachycardic about 160 but not in AF this time, they called my GP and he wanted me to be admitted again. I went on a general medical ward, my heart rate settled down,they swapped me back to the beta blockers, on discharge they said that I need to see the cardiologist in the next week or two for further investigations.

Currently I am shattered, still getting out of puff, my chest hurts most of the time, especially when I lie down or exert myself. I just feel that I am starting to be a burden to my hubbie and my work collegues.

Can anyone give me some advice please? I don't know wheather I'm coming or going? I don't know if its the lupus, AF or both? On a positive note I have my rheumatologist appointment on Friday and my cardiologist the week after?

Sorry for the essay

[Purpletop]

You're worrying me now - I've been having irregular heart beats since Jan 13 but no more than few seconds at a time, two or three times a week. Last week I had a similar episode to yours, although not as severe and that left me very tired for few days. I'm seeing the GP next week and will ask for a referral to a cardiologist because AF is not good news in the long term. I know it can be controlled by medication but I'm more interested to get to its cause - treat the cause and then we'll be fine, that's what I think.

It seems that people with lupus and RA are more prone to AF for some reason, so in principle if we control the lupus, then the AF may also be controlled.

Medication might also be an issue - Prednisolone could cause AF - I don't know whether you've been on it but I have, although some of the episodes I've had were not during the period when I was taking Prednisolone but some were. I'm also on Hydroxy but that is unlikely to cause it. I've just started Mycophenolate but although this does cause irregular heart beats, my rheumatologist doesn't believe that my last week episode was caused by it.

I'm not very helpful here, I know - it's just I'm very much after an answer too.

In terms of the chest pain - that can be a feature of lupus and it doesn't always resolve that quickly, it took me about 4 months to get to a stage where I could breathe normally and not have chest pain.

Let us know how you get on with your cardio pls.

[JulieP1 in reply to Purpletop]

Hi Purpletop, thank you for the response it does mean a lot. I have never been on prednisolone, but I will discuss all with the rheumatologist. I will update when I know more

[Riverbird]

Hi JulieP,

Yes I have both and have taken beta blockers for the last eight years and it is well controlled with them. I worked in a GP surgery at the time so they were all keen to give me the lowdown on it! So here goes as to what I was told at that time.

I started having bouts of very rapid and irregular heartbeats on waking most mornings which lasted only 3 - 10 mins. This is termed paroxysmal AF and generally needs no treatment so I said nothing and ignored it. After about 18 months of this I had the big one. Awoke to a pulse which was so fast and irregular, at the hospital the closest reading they could get was 350 beats per min. and they could not tell from the ECG what was happening as it could not really be read as so fast. Was only hospitalised for 48 hours whilst it was brought under control medically. This was a shock to the system as I was previously very active indeed. Think it is also interesting the number of people on this site who say before lupus they were more than averagely active ? Lupus is not listed as one of the diseases that cause AF or precipitates it, however a few other diseases do and these can be found on the NHS website. I was told to avoid chocolate, coffee,alcohol and smoking - whilst I do not drink, the first two which I adore in bucketfuls probably did not help. They can all cause palpitations. (I have since changed to both decaf coffee and tea which has helped, but the chocolate - well....... you can guess, even though think its bad for the lupus and health generally, must have one vice!) I was asked, like many, if I would prefer the rate or the rhythm controlled. This was because most people find one of the two symptoms less tolerable. I think that now they try to control both but not sure. Unfortunately, as AF starts by an abnormal "electrical" problem in the atria of the heart (the exact cause of this is still not known) I am not sure that controlling the lupus would have any effect, even though it would seem to make sense if the two went together. Perhaps more research is needed to discover if there is a connection like some think ?? Certain groups of people do suffer with AF and age certainly increases it's likelihood, especially the over 60's. Some people can also be treated with shock to the heart to restore the rhythm or ablation, which is what Tony Blair had if you remember. The choice of treatment is different according to any underlying cause that may be present or not and the overall health of the person, and the desire to treat rate/rhythm or both. I personally find exercise has been very limited since on the betablockers, I cannot climb hills very well or stairs, and this is because the heart has been chemically slowed and cannot keep up with the pace of exercise. I become breathless, dizzy and the legs give way if I try too hard. However, apart from the limitations in exercise (I can still enjoy gentle swimming) I can move around perfectly well in the normal sense of the word and also when the lupus allows. The main drawback and side effect with my medication is the freezing hands and feet, not helpful with the Raynauds!

The problems with all of the current available medication including those called calcium channel blockers, is that there are so many that can be used, and half will suit someone and the other half do not, so unfortunately it is a question of trial and error and finding the right one for you. Interestingly some prescribed anti-arrhythmics mean you have to keep out of the sun! Something many of us already have to do. Lots of people also have to take blood thinners too, but not as yet for me, as fortunately mine is well controlled now, so I am lucky. Purpletop is absolutely right in that prednisolone can cause irregular heartbeats and AF, and some other medication can too. This all needs checking out by a doctor. I understand that there may be some new drug treatments on the horizon for it with less side effects.

I do however find it is quite a problem with the chest pain trying to work out if it's the Lupus or the AF causing it and when it might be necessary to see the Dr. I am never sure.

This is just my side of things, and different people will find different symptoms, effects and difficulties in coping with the two "illnesses" side by side. Having said that there are people that do suffer from AF and are not even aware of it until they have a check up for another reason. I am lucky that I do not have an underlying disease that is a recognised cause of AF, and indeed have not been under the eye of a cardiologist for 8 years as it has not been necessary. My GP has performed the odd ECG if I have had chest pain and all have been normal apart from the usual AF pattern. I understand that after being on long term betablockers a blood test to check kidney and liver function is advisable. In my case the lupus is far more problematic to daily living than the AF. So I hope this gives "heart" to purpletop that if she does have AF it can be lived with once you get used to the odd missed beat. Not forgetting that Healthunlocked also has an AF section for much more info.Sorry this is so very long, trying to help through my own experience and the advice I have received.Take care.

[JulieP1 in reply to Riverbird]

Thank you so much for this Riverbird I found this really useful. Could I ask what type of Beta blocker are you on and dose please? I would like to get rid of the side effects I have as I have a very active job and am unable to do my full duties at the moment, so maybe it is like you say just trial and error. Or just realising that I may need to re-think my carer as the lupus was getting in the way as well.

[Riverbird in reply to JulieP1]

I am on Bisoprolol, but I tolerate it very well.

I now have quite a physically active job too and manage to cope all of the time with it from the AF point of view. The lupus on the other hand does sometimes interfere, but I know how lucky i am compared to others. My lupus was diagnosed after the age of 50 and I understand that it sometimes tends to be milder if diagnosed later in life. Calcium channel blockers do not have the same side effects as beta blockers and I understand will not slow you down as much, however I was told the side effects were not always too pleasant from them, so agreed to stick with what I have!

[JulieP1]

Thank you again Riverbird for this it was really useful