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Recently I have developed heart palpitations on and off mostly later in the day.

Posted , 5 users are following.

Roda_4445
Roda_4445

A little bit of history... I was diagnosed with PMR 2 years ago. I slowly dropped down pred to 5 mg ( split 2 1/2 ea am and pm). I am also on Methatraxate 5 tabs 2 1/2 mg once weekly with 2mg of folic acid. I tried x 2 to drop by 1/2 mg but only up to go back to 5. I feel like my symptoms are worse since I did that. I have always dropped by 1/2 mg, can't tolerate any more than that. I'm not sure if I should try increasing dosage as I am far from pain free. Now these heart palpitations have me concerned and will see Dr shortly but ask your opinions out there.nis this common? I'm from the US...is this new medication available here? Really don't think anything changed since using Methatrexate but Rheumi wants me to continue. Any opinions or suggestions greatly appreciated. Thanks in advance.

0 likes, 8 replies

8 Replies

  • EileenH
    EileenH Roda_4445

    Posted

    By new medication I assume you mean methotrexate? It isn't new, it is a long established drug for use in rheumatoid arthritis and is used by some doctors in PMR as a steroid sparer - the same dose of pred is said to have a greater effect. The evidence is mixed: one study in the early 2000s said it helped, one said it didn't, one didn't know. The most recent recommendations in the UK say it isn't recommended as there is no proof it achieves much in the longer term. I know people who managed to reduce their pred while on it only to have a flare and need to go back to a high dose. It certainly does nothing for PMR on its own.

    Many of us feel that a very slow rate of reduction (small steps and spread over a few weeks) achieves just as much, if not more, and with no side effects. The details are to be found elsewhere on the forum.

    Many people are never totally pain-free - but if you have had less pain at a higher dose and the pain has returned the chances are you are now on too low a dose, which is a bit pointless, you have the downsides with no benefits to offset them.

    I too had palpitations from the early days of PMR but didn't really associate them with anything and the GP was fairly dismissive since he never heard anything. It definitely was NOT due to pred (which a lot of docs will claim) as I wasn't on it. A few years ago I was in hospital for something else which triggered a massive atrial fibrillation and tachycardia episode. The a/f has been treated with drugs - and the palpitations have disappeared. The cardiologist was of the opinion the autoimmune part of PMR had damaged the sinus node in the heart. There is a higher rate of such arrythmias in patients with rheumatoid arthritis which is also autoimmune in origin. I certainly know several people with PMR who have developed arrythmias of some sort.

    • Roda_4445
      Roda_4445 EileenH

      Posted

      Thank you for your input, Eileen. I neglected to say I wanted to know about Lodotra which I understand is a time released pred. Effective?  Better or negligible difference? 

      On your advice and others I decided to increase from 5 mg to 6 of pred and I already feel the difference, if that's possible! Maybe it's wishful thinking! I have found it very hard to get up from a crouched position because of pain and more so since lowering to 5. I feel like an old lady! ( 68). 

      Happy to hear that others have had a/f...we all feel better knowing others have experienced similar symptoms. I assumed it was the pred but gues I am wrong.

      Thanks so much for your advice!

       

    • EileenH
      EileenH Roda_4445

      Posted

      Studies showed that the most effective time to take ordinary pred to avoid morning stiffness is 2am so the peak blood level is at about 4am, just as the cytokines that cause the stiffness are released in the body at 4.30am. The studies were done on RA patients in hospital for other reasons so they were awake anyway but who wants to set their alarm for 2am and take tablets! Especially if you need some food. So they developed Lodotra which has a special coating that disintegrates in the gut after 4 hours when taken within 3 hours of food. You take it at 10pm - and it all happens automatically. 

      I was put on it because the only other form of corticosteroid available here in Italy is Medrol - which didn't do anything for my PMR but gave me some delightful side effects: massive weight gain, skin and hair from hell and a beard and muscle wasting. All of those immediately reversed when I was switched to Lodotra and I have lost about 38lbs in 2 years and everything else is back to normal. The system here means it costs me about £5/month as there are no restrictions and it is approved for use in PMR. In the UK it is not yet approved for PMR, a trial is supposed to start but it has disappeared into the ether. That means that since it is approved for RA, which is what it was originally developed for, it is available but not on prescription on the NHS. It costs up to about £75/month depending on the dose you are on. It comes in 1,2 and 5mg tablets and you combine them to get the right dose as you reduce. You cannot cut them because of the coating.

      I think it is great and does seem to work very effectively and I have far fewer side effects. On the other hand, in the UK on enteric coated pred I had no problems and the bit I used ordinary pred for I had no problems either. In terms of avoiding morning stiffness, I suspect you can use enteric coated tablets to do the same - take them at the right time in the evening and they will combat morning stiffness since they take about 6 or 7 hours to work.

      And yes - even 1/2mg can make a massive difference so 1mg almost certainly will.

    • ptolemy
      ptolemy Roda_4445

      Posted

      In UK the current cost of Lodotra with a private prescription is currently £1.66 a tablet irrespective if it is 1, 2 or 5mg. So if you are on 5mg of pred it is £1.66 a day but if you are on 6mg it doubles to £3.32. As Eileen says you take them at 10pm, they have an innovative coating which is patented. They are supposed to have fewer side effects, although I have just heard that in passing.
  • pat38625
    pat38625 Roda_4445

    Posted

    Hi Roda, like yourself I developed palpatations and it would be at night time  when I felt it most.  I cannot remember if it was before PMR or undiagnosed PMR.  My dr. put me on beta blockers and it seemed to do the trick.  I don't take them all the time it is as and when, but it is quite some time from I took any beta blockers and the palpatations have gone as well.  I don't know if my info will help or not.  I am just telling you about my experience.  Anyway good luck.    Regards Pat
  • ptolemy
    ptolemy Roda_4445

    Posted

    I have never actually had palpitations, but my rheumy seemed almost disappointed that I didn't as he seemed to think it was very common.I have never actually got rid of the pain totally particularly around my neck and shoulders. I also still get pain off and on at the top of my thighs. I have had flare ups by trying to reduce too fast and had to increase by 5mg pred. I am now sticking to .5mg reductions now which so far seems to be working.
    • EileenH
      EileenH ptolemy

      Posted

      That's interesting, ptolemy. When I was dx'd with my a/f I did ask the rheumies (indirectly) about whether there was a higher incidence in PMR/GCA and got the wriggle out answer "it's higher in that age group anyway" which wasn't answering my question! It is higher in a lot of forms of arthritis - I would expect it to be higher in PMR too. 
  • charlie44644
    charlie44644 Roda_4445

    Posted

    I think the inflammation of PMR can stir up latent ectopic beats and a-fib.

    My atrial fib went nuts when my PMR started up. I was in and out of fibrillation almost every day where as my beta blocker had kept it under pretty good control prior to PMR. Consulted with my cardiologist and with an increase in dosage of 25 mg (metoprolol 75mg to 100mg) it has been back under control. The inflammation has decreased considerably on the prednisone. Hoping to complete the transition to 10mg of prednisone next week. 

    Charlie44644

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