AF and RD... Anyone have both?

[Taraheart]

Hi lovely people,

Just wondered if anyone here has AF (atrial fibrillation) as well as RA and how this impacts on the treatment options.

I am forever frustrated when describing side effects of the drugs which are put down to "could be menopause"...or as in today's telephone appointment, "could be your anxiety". Have been through the menopause(in fact was happily taking HRT when got the RA,the dmards put me in hospital with AF so now sadly cannot have). Currently on second biologic Amgevita(first one Benepali didn't have any awful side effects but didn't help,tried it for 6 months, joints were getting worse) . Been on amgevita 4 months, has helped bring inflammation down but feel rotten. I could live with the chest infections now and again,even the tiredness ,headaches and awful sweating. But I cannot live with the awful palpitations, explained to nurse that I keep a close record of my HR and BP(take meds for this,see cardiologist) and have noticed for 2-3 days after injection my HR goes up to 130 at rest,and I'm often woken up in the night with pulse over 120(very frightening), I have stand by meds to take which bring it down eventually. Also I have stooped the amgevita for the last month(on docs advice) and have had no episodes of AF, nor needed to take any stand by meds for the heart,headaches and sweating all near gone. Trade off is I'm feeling stiff,awaiting blood work. Told nurse all this and she thinks it may be that I'm anxious having the injection... oh please, I'm anxious most of the time but my HR isn't over 120 at rest!

Has anyone found any of the biologics that don't upset the heart too much?

Thanks for listening, much love XxX

[allanah]

Me but I'm on riveroxaban to thin my blood so af does cause problems, tocizilumab infusions that don't cause my AF to be worse, statins , steroids , and mine settles down when my RA us well controlled and worse when I'm flaring.

[Taraheart in reply to allanah]

Thank you,. I take apixaban,bisoprolol and perindopril and the AF and high BP (plus statin for my cholesterol) have all been well controlled prior to starting Amgevita. It's a shame as it's brought my inflammation down to the lowest it's been for 2 years,but the episodes frighten me. The Benepali injections tried previously didn't bring on the AF but didn't help the joints at all. It's so frustrating as I know my body and this is definitely not caused by "menopause"or "anxiety".Getting my bloods checked but can't get to see consultant until September so I'm dreading being off biologic that long. Seeing cardiologist in July. Rock and a hard place I guess.

XxxX

[MadBunny]

Yes I do. Im on edoxaban to thin my blood and a beta blocker to slow my pulse down. I was already on methotrexate and Cimzia for my RA and have not had any problems. The af has settled since I started the meds for it 2 yrs ago.

[Taraheart in reply to MadBunny]

Thanks for reply. Yes,I know all the cardio risk factors for us,take apixaban,bisoprolol, perindopril,statins etc. Check my HR and BP regular,cholesterol good,all well controlled prior to starting amgevita. Shame as it's brought my inflammation down to the lowest it's been in 2 years,but the episodes frighten me(had none since stopping it). Know it's not "menopause "or "anxiety",as suggested by nurse,will get my bloods checked but she said cant get to see consultant till September ,that'll be months without any biologic. Seeing cardiologist in July but that's settled for now. Cimzia isn't a biosimilar is it?

XxX

[MadBunny in reply to Taraheart]

Cimzia is an original biologic although it was relatively new when I was put on it in 2014.Im sorry to hear it's going to take so long for you to be seen by the consultant. I have a biologics nurse who is very helpful but obviously any decisions about meds are ultimately taken by the consultant. Having said that, I only see him once a year and the nurse is more thorough 🙄

[Taraheart in reply to MadBunny]

It was just a thought as I've only been offered biosimilar injections so far (Benepali and amgevita), can only tolerate 10mg MTX. It's the opposite in my clinic,the nurses seem rushed and make comments about "needle anxiety",which I don't have by the way but would take a really big needle to give a 140 pulse whilst trying to sleep!!! And then tell me there are "not many other biologic options to consider"...really!!! Whereas the consultant listens, doesn't treat me like a moron and discusses choices(as there are many as we know). Think I'll see what the bloods show and make a fuss, see if can get an earlier appt,unfortunately it's the only way the nurses seem to pay attention!XxX

[MadBunny]

To be honest I'd be tempted to make a fuss- but that's what I'm like 😁I'm only on 10 mg of mtx - was on 20 but it was cut down when I went on the Cimzia and my consultant was talking about reducing it further. Nothing's happened yet. There was also talk of me taking the Cimzia every 2 weeks instead of 3 as I've been in remission for a while but I said I didn't want to risk it .

[stubbs1958]

I was only on Benapali for 8 weeks i went back on Enbrel because it hurt too much injecting Benapali although it did seem to work with me., sorry I can't be more help

[Larachez2102]

Hi there I’m so glad Iv seen this comment. I suffer really bad with svt and get a heart rate at least 220 and have to go to a&e to get it fixed. And one of the side effects putting me starting this drug is that a side affect is tachycardia, the thought of having this once a fortnight through this drug terrifies me. Have you managed to sort yours out. X

[Taraheart in reply to Larachez2102]

Hi,still kicking up a fuss here trying to get earlier appt with consultant (rheumie nurse helpline useless).Going to write to consultant.Since stopping the amgevita I haven't had any scary AF episodes at all,and my anxiety levels have dropped considerably(definitely caused by this drug).Its a shame as did help my inflammation but cannot tolerate such severe physical and mental side effects.Really need to chat with consultant about the next treatment plan.Cardiologist wants me to have an invasive angiogram to check the old vessels now too.Are you using amgevita? Xxxx

[Larachez2102 in reply to Taraheart]

I haven’t started it yet I’m due to start it next week but I’m so worried. But I’m stuck on what to do because my bones and joints are extremely painful where I can’t get out of bed most days but then my heart is more important to me. I’m so stressed out about it all. I may just try some herbal medicine and see how I get on. I’m 31 so quite young to be as bad as I am with it all. Xx

[Taraheart in reply to Larachez2102]

Sorry to hear that. Of course I can only say how it affected me personally, not everyone gets the awful palpitations or anxiety, and I stopped the injections after speaking to the rheumie nurse. Downside is I'm now getting stiffness back and am ready to try another biologic, still trying to find one that works and I can tolerate. You can talk to your doctor about your fears , ask for advice? I know how scary it is....all we can do is keep on trying. Xxx

[Larachez2102 in reply to Taraheart]

I have such a poor immune system I hate new medication because of terrible side effects I can cope with headaches sickness but the palpitations and anxiety I can’t cope with. Hope your new meds work for you. Xx