PMR

[bbee042261]

Hello everyone I was recently diagnosed with PMR but unfortunately cannot take steroids as they give me heart palpitations. Does anyone know of any other treatment options that may have worked for them? Would love some input! Thanking you all in advance.

[piglette]

What does your doctor suggest? Palpitations are a side effect of steroids that a lot of us have suffered.

[SheffieldJane]

I have heart palpitations too and find that Propranolol the Beta Blocker is effective. Obviously with doctor's advice but in my view untreated PMR will cause you to suffer much more and the inflammation and pain will get worse unchecked. Currently there is no alternative to Prednisalone but other drugs are being trialled. PMR is potentially dangerous, particularly with the danger of GCA

[greenheath]

Hello bbee

I suffered with severe palpitations too and have written to this site on the subject in the past. My rheumy told me it had nothing to do with the steroids he prescribed! So I researched it myself and discovered that yes, it did. I also spent a lot of money with a senior cardiologist who discovered nothing the matter with my heart, but said nothing about my steroid intake!

I found that research had been conducted on a large group of steroid-taking patients in Holland, all suffering with palpitations. It found that once the patients were able to reduce their steroid intake to 6mg or below, no palpitations occurred. This was certainly my experience, and once I was able to reduce my steroid intake to 6mg, I had no further palpitations. So there is light at the end of the tunnel.

Good luck for the future.

Greenheath

[PMRpro Ambassador]

Palpitations can be a side-effect of pred, usually at higher doses - even if, as greenheath says some doctors appear to be oblivious of the fact - but they can also be due to the autoimmune part of PMR which was the case for me and leaving unmanaged inflammation in your body is increasing that risk as well as the risk of other cardiovascular problems and even some cancers in the longer term.

However - there is no other option besides pred for managing PMR at present. I've had "ordinary" palpitations, they were never as bad as the overall effect of PMR. I also had a couple of 5 hour episodes of atrial fibrillation which the doctors put down to pred - it wasn't, it was another drug I'd reacted to - but I imagine yours are rather less? Some people found that if they took their pred in split doses it reduced the incidence of the palpitations - it isn't the usual recommended way to use pred but if it works, that's the point.

I won't lie by the way - there is another drug that seems to do a good job in PMR as well as GCA but since it costs £12K per year and it isn't obvious yet whether it will work in a short time and then allow a period of remission without taking it monthly it isn't likely to be available on the NHS in the foreseeable future! It has potential side effects too.

[Sallyaches]

Hi, just some thoughts, have you had a 24 hr cardiac recording taken to help rule out anything other than the steroids? I have bought a new b.p. monitoring machine and it does pick up irregular heartbeat .

I had a friend who had palpitations and was told to exclude totally caffeine and alcohol . Despite being very sceptical it did work for her. It may be useful to try until you get some other advice.

I would be very cautious about trying to cope without Prednisilone, the inflammation really does need to be controlled.

Hope you soon will be feeling better.

[Polylinc in reply to Sallyaches]

Hi Sallyaches

Could you tell me which BP monitoring machine picks up irregular heartbeats.

[Sallyaches in reply to Polylinc]

The one I bought was Omnicron M3, pressure monitor, which I got from Amazon .

[Polylinc in reply to Sallyaches]

Thank you Sallyaches ... Happy Christmas and 2017 x

[Mourneriver]

Try LDN ( low dose Naltrexone ) not known by many medics, though there are a few in UK. LDN-international.com will give you a list of practitioners. It is not available on NHS but costs about £1 per day. It can be fantastic for many auto immune diseases, MS, Parkinson's etc. The worst side effect is that it may not work. Other side effects which last a couple of weeks , are sleep disturbance, slight diarrhoea, vivid dreams. I started taking it July 2015 and when PMR returned this July is was very slight but recognisable. I keep an eye on diet, I.e. No gluten or dairy, little red meat..........the usual and have added Noni juice. Many days I am pain free , others just a whiff of pain.

I also have an amazing spray from Hungary , which has been passed for UK in September. It is based on nanotechnology. It has no chemicals but essential oils and herbs, it takes pain away like magic. Acute pain within minutes , chronic slightly longer. It is available as an MLM business , so not in shops , but individuals can buy it directly from Hungary. I can let you have details but suppose I may not mention the name here.

Good luck!

[jwb43 in reply to Mourneriver]

Mourneriver,

I found your reply very interesting. What dosage of LDN are you taking? Did your pain relief again right after you started taking it or did it take a while to build up? Also how can I find out the name of that Oil spray that helps your pain a lot. If I give my email can you send it that way. Would really like to know anything that might help me more because I am not currently on prednisones just managing with pain meds. Thank you so much .

[PMRpro Ambassador in reply to jwb43]

There is always the private message option on here - you don't have to email stuff.

To use it, click on the name of the person you want to send a message to on their post - this takes you to their profile page. The Message button is at the top right and then you just write them a private post.

[Admiral06]

Hello bbee042261, I too had both tachycardia and ectopic beats (one per 15 seconds) soon after the steroid treatments began. At the time, I was taking Lisinopril and Hydrochlorothiazide to control my hypertension and when my doctor substituted 25 mg of a beta blocker named tenormin (atenolol) for these meds the abnormal beats and rapid pulse stopped. After 14 weeks of treatments, the same symptoms reappeared, but seemed to be related to a higher than average level of physical activity. In this instance, the symptoms were related to a low level of potassium. When this issue was corrected, the cardiac issues disappeared, but I must now be very careful of potassium intake or they will quickly return. Just in case, I would have your doc check potassium levels and ask if you are a candidate for a beta blocker. Lastly, some types of ectopic beats are benign, and while uncomfortable, will not be nearly as bad as the PMR pain. Has this been determined yet?

Oh, and I almost forgot to mention that I stopped all coffee as it increased the number of ectopic beats. Good luck, because without steroids you will be shoveling against the tide!