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Atrial Fibrillation and PMR

Posted , 5 users are following.

jan21306
jan21306

i was diagnosed with Atrial Fibrillation after trip to A and E two weeks ago and am going to fast track clinic tomorrow morning.  Have been on pred for PMR for 14 months and currently reducng from 81/2 to 8 mg.  i seem to remember that Eileen wrote about having AF as well and wondered if there is a connection.  How are you managing your AF Eileen and does anyone else have the same problem?

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH jan21306

    Posted

    As far as my cardiologist was concerned, yes. He believes it is due to the autoimmune part of the PMR having damaged the electrical cells that manage heart beat. It certainly wasn't pred - the episodes started long before I was put on pred but after PMR had appeared. I didn't realise what they were, they were quite mild palpitations, I did ask my GP and he was fairly dismissive, telling me to dial 999 if I got too worried! There is some logic in that the chances are that you would get an ECG trace from the paramedics but I don't think they ever lasted very long. It was finally found while I was in hospital because I had a rare but violent reaction to iv diazepam which was being used as a muscle relaxant - it certainly lasted long enough then! 

    They'd got it under control at the time using medication - and it happened 2 nights in a row because it didn't occur to them it was the diazepam, they thought it was the high dose iv pred they had also used. They are quite relucant to use cardioversion here since they say it rarely works in the longer term so prefer drugs. Ablation is also regarded as a final resort. I'm on BP meds and an antiarythmic: Losartan, an angiotensin II receptor antagonist, and bisoprolol, a beta-blocker, plus propafenone. I assume that is so I am on lower doses of each since that usually means fewer side effects and I certainly have very few. The first BP drug they tried I had a fantastic allergic reaction to - the itchiest rash I've ever had that started around my neck and spread down my trunk and arms! I started with propafenone 2x daily, now I'm on 1 morning and 1 evening and 1/2 a tablet late afternoon - and if I miss that I have an episode about 11.30 or 12pm. Really, no problems providing I don't forget the tablets!

    • EileenH
      EileenH

      Posted

      Ooops - yes, and a relative of warfarin too! That is by far the most important part of the medication as far as they are concerned here and you aren't allowed out of hospital when they find a/f until you are adjusted with the anticoagulant. Clots can form in the base of the ventricles and the irregular heart beat can stir them up and send them off around the body - until they find the heart, lungs or brain which spells trouble! a/f is one of the primary causes of stroke - I'm fine with taking rat poison on that basis! I was offered one of the new "you don't need your INR to be tested" inventions. I declined - at present there is no antidote so if you have an accident you might have to have pints of blood to stop bleeding. It also does look as if it is possible to end up with a high INR with them - testing MIGHT be a good idea after all and it was the lack of them that was the Unique Selling Point. I gather cardiologists would tend to choose warfarin. Neither I, on Sintrom, or my husband, on warfarin, have had any problems with them at all.
    • jan21306
      jan21306 EileenH

      Posted

      Thank you for all that information Eileen.    It will be good to go into the clinic armed with so much information.   I have had one episode of seven hours on and off AF which was all recorded on the Ecg monitor in A and E, and another episode of SVTs also in A and E.   I am not looking forward to lots more medication, but I am looking forward to a stable heartbeat again !  I have rather lost my confidence to go out shopping etc.  I live on my own so it is all quite scary, although my daughter lives nearby and I have a wonderful neighbour.
  • macas02
    macas02 jan21306

    Posted

    Hi Jan, Yes I have had AFIB for about 2years and PMR for nearly 6 years.

    When I questioned the Cardiologist if Steroids had caused the AFIB he more or less laughed at me!!! But there are a few people on this forum that have both.

    I am now on a cocktail ! of drugs and a blood thinner. I have struggled with all the extra medication but thankfully my body seems to be used to them and I don't have too may problems with the AFib. On 1.5 mg  pred and will stay with that until I feel confident enough to decrease again.

    Hope tomorrow goes well for you

    Mary

    • EileenH
      EileenH macas02

      Posted

      When mine was diagnosed and I realised there were quite a few PMR-ers with a/f I sent a question to the rheumies associated with the PMR charities asking if there is a higher rate found amongst patients with PMR. I got a very dismissive response of "it is very common in that age group anyway". That wasn't what I asked - is it HIGHER amongst patients with PMR than amongst the general population? It certainly is amongst patients with other autoimmune disorders such as RA.

      I have to admit, I struggled at first having gone into hospital taking pred and calcium and nothing else and I came out requiring a daily dosette box! It was really upsetting. Now I carry a make-up bag with all the packs of tablets and feed the dosette box every night. I'm paranoid when we go away with the campervan - I check whether the bag is in the van at least 3 times! I also carry at least one day's worth of pills with me when we go out for the day in case I don't get back home for some reason.

    • macas02
      macas02 EileenH

      Posted

      Eileen you made me smile about being paranoid, I thought I was the only one that checked my pills so many times before I go on holiday and still can't believe that I've got it right,  I also carry  my phone with ICE filled in with all my details "just incase"!! 

       

    • LayneTX
      LayneTX macas02

      Posted

      Oh my gosh, me too! I was pouting lately saying now I have so many pills to keep track of, have to take a specific times, with food or on empty stomach or at night before bed time, all that water, getting up every two hours to pee, ...this morning my Pred and Plaquinel box was empty...time to refill everything again! So yes... I complained to my sweet brother who asked how I was doing that I dislike this life I have now having to take all this stuff.

      ugh... But yes, I then said, but I'm glad I'm not worse! 

      Guess it is funny in a way when Eileen said that and it makes us laugh, though sarcastically I guess? Ha. We can relate... wink 

    • jan21306
      jan21306 macas02

      Posted

      Thanks for your reply Mary.  I am sorry you too have Afib, but it certainly helps to know that other people on this forum can cope with it, therefore I can too.  I am very anxious at the moment and that isnt helping.    How wonderful to be on 1.5mg pred.  After 6 years I hope you manage to get down to zero.    
    • macas02
      macas02 jan21306

      Posted

      Thank you Jan, I hope so too but having been on this forum I have learned to take reducing very slowly and avoid  yet another flare.

      I hope you will soon be feeling better and feel that you can cope.

      Maryx

  • macas02
    macas02 jan21306

    Posted

    Hi, Yes I have had PMR for nearly 6 years and was diagnosed with PAF about 2

    years ago. My Cardiologist looked at me as if I was mad when I suggested there might be a connection so for me it was good to read Eileens thoughts on it.

    I am taking quite a lot of medication including one of the new blood thinners.

    I did have problems with side effects with some ogf the prescribed medication but seem to have it right now. I feel fine but lack energy (or am I just getting older!!)

    • EileenH
      EileenH macas02

      Posted

      Not just my thoughts - the thoughts of one of the cardiologists down at the main regional hospital. If he thought it, that's good enough for me when I already knew that there are figures showing it is more common in other autoimmune diseases. 

      I have the occasional morning where I feel as if I've been rubbed out - and if I check my BP it has, for some reason, fallen to 100/60 or thereabouts. The first time I had a few weeks of it I spoke to the cardiologist I saw at the local hospital - at that time it was in summer and seemed to coincide with particulalry hot weather - and she suggested halving one of the 2 BP meds. That has worked until recently - again, where my BP is usually about 115/67, it is lower at times but we are now in the depths of winter!

      How do you like the new blood thinner? I was offered it but turned it down before she'd finished the sentence! I'll let them iron out the problems for a few years first - I'm fine on sintrom and have to go to the GP to get prescriptions every so often anyway. We used to go to the phlebotomy clinic at the hospital once a month and combined it with a quick wizz round town - been handed over to the GP to do now which is far less convenient really as it is further away but that's the way the cookie crumbles I suppose.

    • macas02
      macas02 EileenH

      Posted

      I mdoing well on the blood thinner Apixaban taken twice a day but on the lowest dose. I was originally on Rivaroxaban but this caused a bleed

      which was scary, GP decided I should have a Gastroscopy before deciding it was the medication, thankfully all was well. I also take Bisoprolol anad flecanide and spirolactine, and of course pred. I hate taking all this medication, before PMR almost 6 years ago I didn't take any medication but I do realise this is to avoid a stroke and my AFib is under control.I see a cardiologist every 6 months (unless they cancel the appt which happens often and then its longer)

      My PMR is good on 1.5mg and intend leave it at that for the winter and then try to decrease.

       

    • EileenH
      EileenH macas02

      Posted

      Tell me about it - I didn't even take paracetamol for a headache! Then PMR eventually meant pred - but nothing else. Then the a/f was found and now I have a daily dosette box - can't even manage with a weekly one! I found it really upsetting at first - and if you knew me you'd understand how strange that is!

      No - I'll stick with sintrom, cousin of warfarin I think. I'm really not convinced by the claims for the new stuff. I usually see someone once a year - but my GP knows I'd shout if I was worried. I had a stress ECG last year that had an elevated section which is either due to being female or it meant poor perfusion of the heart. Because of the PMR I couldn't do the full wack on the the bike so I got a full chemical stress echocardiogram - all OK so it was due to being female! That got a few other things covered - obviously no sign of a thoracic aortic aneurysm, for example, and no sign of incipient heart attacks.

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