Thanks to everyone who has replied to my post. I don't feel quite so isolated now! Can anyone tell me if they have experienced palpitations whilst on pred?
Palpitations.: Thanks to everyone who has replied... - PMRGCAuk
Palpitations.
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sandrathecat
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My heart rate has gone up from mid 60s and 70s to over 90 most of the time. I worked out a lot... before GCA. My family doc is not worried. I just had another holter monitor last week. Awaiting results. No one seems panicked.
Thanks very much for your reply. I probably make it worse by worrying.
I took off my Fitbit on the advice of my doctor. Took much checking my heart rate.
Fitbits are the worst for people with health issues that require medications that can affect your heart rate and are best avoided to prevent unnecessary stress.
Plus , a recent in depth research project at Aberwystwyth University on all types of these monitors noted that the original Fitbit could be upto 41% inaccurate in counting the amount of steps in walking pace ( overcounting ) and generally upto a third inaccurate , can't remember off hand the name of the more accurate monitor ( still inaccurate but not as much) , just remembered the % it was over estimating by as it was a shock.
Hilariously they all undercounted when people were running ! Talk about trying to make us strain to gain!!
Yes, I had wondered about this a long time ago. A friend was showing me her Fitbit and waving her arms around. She is very hand/arm movement active when speaking, so I thought, "is that registering as a step." As an ex competitive runner I can see the latter as one moves the arms/body synchronizing with the legs
Yes it was repeating , perhaps I should write a quick fact post to the study / newspaper article to show it. It was an arm movement thing
I got lots of steps in the back of a bumpy bus!!
Don't spread that around , I know alot of people who would try the bumpy ride from Bangor in their Fitbit just to get out of doing a few steps😋😁😂😂😂
Hilarious
🤣
I agree. A friend and I did the same exercise. We are same height. She always had far less steps than I did. When I was working out I used it as a challenge to keep moving. After GCA and prednisone I became obsessive about heart rate. Better to take it off
I would still see your cardiologist and make sure.
I will do that. Thanks for your advice. Very best wishes to you.
You too
I know it's easy for them when they aren't the ones going through it , it would be a different kettle of fish if they experienced what they class as " not remarkable" themselves
PMRproAmbassador
I have had palpitations since having PMR. The cardiologist believes the atrial fibrillation was caused by the autoimmune part of PMR damaging the electrical cells in the heart.
Most doctors will dismiss it as "the pred" - it doesn't matter why, if it is an arrythmia it needs to be diagnosed and appropriate measures taken.
Thanks again for all the good advice you have given me. I do appreciate it very much.
I also have palpitations , and inappropriate sinus tachycardia at the moment which I have been sent to the Cardiologist to examine. They are assuming it is going to be to do with my autonomous nervous system from Autoimmune activity , and likely to be Pots , or some form of issue caused by activity upsetting my BP.
It's an important issue and one of the things you need to make sure you discuss with your Rheumatologist at your appointment next week.
They will check your heart rate and BP then , listen to your symptoms and then make a decision wether they think it is wise for you to see a Cardiologist.
If they don't mention it , you can always ask about it , they can refer you and consultant referrals , and especially any tests ordered to do with Consultants appointments , come alot quicker than GP ones . They want the results back so they can complete your thorough diagnosis and get you back for a follow up in good time.
They may start the process there and then and send you for an X-ray and an EEG , but don't panic if they do , that's a good thing , a swift response does not always mean there is something wrong , just that they are on the ball and want to rule out any issues as quickly as they can to get their job done.
As something to help with palpitations , especially if they get worse with movements is:
Move slower from one position to another , especially if you have been sitting or standing still for a while , and pause for a moment before you walk off to let your BP adjust .
Medical recommendations is to drink more mineral water , and have water with you at all times.
In the morning , sit up slightly in bed , drink some water quite quickly , then sit up on the bed , pause , drink water quickly again . Stand , pause , drink again . Then walk to where you need to go ( probably the loo😋😁) .
Then drink water throughout your breakfast , even if you have juice for tea at the same time.
They suggest drinking the equivalent of two small bottles of water before really starting your day.
Then always have a drink of water before you get up from sitting , and again as you pause and stand .
The combination of pausing and the cool water reduce the BP/ heart rate reaction and then the palpitations.
You are also meant to have a good drink using the same method as you you to bed to stop palpitations when you lie down and help you sleep.
If you need the toilet in the night they suggest you do the same thing.
Until recently , this method helped me 75% approx with my dizziness and palpitations.
Palpitations can also be because of mineral and Vitamin D deficiencies , you could ask your Rheumatologist or GP to do Vit D , Calcium and Magnesium blood tests. If they don't do the tests , you should still increase your vitamin / mineral intake with food but also a supplement , take it during a meal for better absorption . Eating more shellfish , oily fish , green vegetables , eggs and Brazil nuts, mushrooms , green teas, help increase BP health , and an Omega 3 supplement helps heart health and joint inflammation .
Relaxation and slow deep breathing exercises through the day help train your heart too. You do them during the day just for 5 minutes at a time even when you are not having palpitations , they help you relax and it helps your muscles too. And you can do them to help reduce your palpitations when they start .
Extremely helpful. Thanks so much.
Just read about your cardiologist mentioning link of atrial fibrillation to pmr. 2 years ago I had to go to A and E with the atrial fibrillation, first time.
I’m now on Apixaban2.5 mgs twice a day, and Bisoprolol 1.25 mgs at night. Was offered an ablation, but declined as all was going well. What about you? I’ve not had any further episodes, thank goodness, it’s scary isn’t it?
I'm on Pradaxa (dabigatran or something) plus bisoprolol plus losartan plus propafenone (an antiarrythmic). I was well controlled until this last flare - so the cardiologist is reluctant to mess about with the other stuff, it might send the BP down too far! They dislike using ablation here as it so rarely works for more than a relatively short time and keep it for when there is no other choice - especially for paroxysmal a/f.
At the right dose of pred it is fine, but at present even 1mg less lets the a/f out of its box after a few days. It's frustrating but in general I feel well. More irritating in some ways is I tried methotrexate last year and it was horrible, I felt worse than I ever did with untreated PMR! And tocilizumab (has been mentioned) is probably not a good idea with a/f...
You sound like me with all of your meds as well.
If we got together in the morning we would make an excellent pair of maracas!!
😋😂😂😂
PMRpro, thank you for your reply, it’s comforting to know there is at least one other person with the added problems. Like you I was given Losartan daily, as my BP swings about, but I have come off it at present because I was feeling spaced out with BP 90 over 50 and a really slow pulse. GP agreed. Sometimes you feel as if you can’t win!
My pred isdown to 3.5 now, but just getting over a chest infection with 2 separate lots of antibiotics, and just have no energy at all. Oh this sounds moany, reminds me of that saying, my get up and go, just got up and went!
That's exactly why my cardiologist is reluctant to add anything - though an expert did the drug selection originally. One part of the mix for me is a drug (can't remember which offhand) that puts a cap on the upper BP level without allowing the lower one to go down too far and a separate drug for the arrythmia to avoid hypotension - I'm surprised you could even get out of bed!! That said, I had readings like that post-natally and my GP was amazed I was still upright! That was without medication too!
~PMRpro - would you know of any research on PMR & artial fibrillation? The genetic atrial septal defect that I had managed to live comfortably with (since hole repair 1988) has noticeably changed my electrical circuitry since PMR (I think) - my T3 & T4 faulty anyway but more exaggerated at times + most disconcerting.
Some meds do not agree with me but carry Diltiazem HCL if/when needs arises as it has in past.
Afraid not - I asked a research rheumy about it and got "but its common in the age group anyway". I know - that wasn't what I asked, I asked is it more common in a population with PMR than a population without! However, vasculitis is associated with it I think. Part of the problem will be that too many doctors assume that palpitations are due to pred. They aren't always. But there aren't that many people who know the a/f was there long before pred - but not before PMR.
~Hmmm.... just love "but its common in the age group" - sigh!! My Cardiologist youngish & most receptive to any info hence my query of research.
I guess research will be evident in years to come - by then we will be in "God's holding paddock"!! ~
I've worked out my palpitations are triggered when I eat or drink something with histamines in - I have histamine intolerance (HIT). It's relatively unheard of but surprisingly common, particularly with people who have an autoimmune condition, as inflammation contributes to histamine overload. Since cutting out things with histamines in, including tea and wine, I very rarely get them now. I'm going to post more info about histimine intolerance sometime.
I'm delighted to say tea and wine don't do anything untoward!!!!
I often have palpitations ,also missed beats which never happen when l have had heart monitoring or ecg’s. I find it all rather scary but nothing seems to be done about it,probably because the doctors never detect it when it happens.
Thanks for replying. Hard to know if the palpitations are caused by anxiety or the illness or the medication. Keep a record and keep mentioning it to your doc. I am trying to keep as calm as I can and keeping off coffee etc. Very best wishes.
Best wishes to you too ,thanks for your reply,it is a good idea to keep a record x
I have had palpitations for years, red wine makes it worse. This was pre Pred and my pulse went up to over 160
I saw a Cardiologist and had all the tests including an ECHO The conclusion was the only thing wrong with my heart was that it was attached to my head.
A long time ago I was referred to as Worry Guts which is about right, it doesn’t help 🥂🥂
Docs can be really dismissive of our worries. As you say it does not help. We should stay off the red wine for sure Edith!
I have done, that and coffee 🥂🥂
I have a horrible suspicion G&T may be implicated ...
Oh please not the G&T!!! There have to be some pleasure left!
Just reread my last post. Not very good English. Maybe I should stay off the G&T!
Never! 🥂🥂
I know - find it quite scary ...
Juniper is good for you mate , and G and T is better for the waistline.
My Dad had severe Coronary Artery Disease and many Heart attacks from a young age ( poor bloke broke very early!!) .
His doctor suggested drinking a glass of proper tonic water with the quinine in it every day to help his arteries.
And when I had a heart scare in my twenties a very well known Heart Specialist suggested a glass of red wine and 3 cubes of dark chocolate every day because it was good for you.
So those that can still drink do and raise one for me as well , I miss a G and T😋😍😘
G & T, red wine and chocolate. I feel better already!
Maybe, G&T and red wine are high histamine
That's awful but so sorry I read your answer and couldn't stop laughing at one sentence ,
" The only thing wrong with your heart is it's attached to your head"
Yes , with GCA that probably true .
Did a doctor actually say that to you , if so that's terrible , and that sort off attitude is part of the problem , but the sentence itself sounds so comical.
Bet they didn't give you any sort of techniques or relaxation exercises to help you deal with . They never do help with the right information to help you help yourself. Yet another thing that annoys me about Health care. They should have pamphlets , information packs or at least advice they can give you off the top of their heads in each Department to help you with the right exercises , diet , life style changes etc.
I have asked for this sort of DIY advice at every diagnosis or before every surgery I have ever had , no pamphlets , no idea! That's what needs to change in health care.
Breath deep Edith , and try some of the tips I gave to SandyCat above , they might help.
Oh Blearyeyed, don’t worry the doctor who said that was my husband! It was meant to be reassuring and amusing. There is nothing organically wrong just I screw myself up.
I am actually fine now and try to take it easy, that’s something I have learned since I have had GCA
I agree about the advice and life style changes, I have read your post to him and he says he does try. I know it’s not enough but General Practice is just so frenzied. I am so grateful we have this Forum, I have learned so much and had so much support.
Hope you have a good day
🥂🥂
Thing is I totally understand that they don't have time to research it and write them themselves , they already work one hell of a week.
But , it's an NHS wide problem.
He won't be able to just go to an NHS website to order pamphlets ( or maybe you can but no doctors bother to order them , no that's very cynical ) it seems there are none for any but the usual diseases , and then they tell you nothing useful about diet or exercise either.
I have been to specialists and asked in England and Wales , and searched the NHS internet site , nothing , and obviously the specialists don't know themselves if you ask them.
It's not surprising I suppose , they know nothing about diet or lifestyle in the department's that should .
Have you seen the food they serve in hospitals ? not just horrible , but nutritionally deficient in every way. I base this on my experience with my gall bladder , lying in bed with pancreatitis not one item on the menu I could eat. Even the soup was always cream of something , the yoghurts all high fatcto compensate for sugar ( you can get low both it's not either/ or))
In the end , on day 3 , when I felt a little hungry , the African Male Orderly was so fed up , he snook down to the kitchen and made me an actual ham salad ( not an NHS one , which is one slice of each veg and 2 tbsp coleslaw!!).
Allegedly , the menus in Welsh hospitals are arranged by their Nutritionists. If that's the case , either something is being lost in translation between them and the chef or they know nothing about a good healthy diet.
You can't work with what you haven't got , and the NHS have not got any idea on diet or lifestyle, so how can GPs find the info to give to their patients without hours of work they have no time for.
If your husband gets his Secretary on it they will have to trawl through charities websites etc. , he'll have the only surgery in the UK so clued up , it will be TV newsworthy !!!
and as I am leaving my GP as soon as I get the extra diagnosis I need ,I could do with a good new surgery , don't mind travelling 😋😁
When I spent 6 weeks in hospital with pre-eclampsia with Daughter No 1 in Dundee they made me a proper salad every day - gone are those days. OTOH, a coeliac friend was in hospital for a week in Durham - and got shepherd's pie EVERY SINGLE DAY! Sainsbury and M&S were just up the road - but she was on her own, no visitors, no food. Here, they know as soon as we are admitted that a new patient with dietary requirements is there and the dietician appears as if by magic - and you are allowed to pick mix and match from the 3 menus offered daily if you are fussy like OH and gluten-free is available. But we have a kitchen, everything is prepared fresh, not frozen stuff bought in and stuck in a microwave.
More years ago than I care to remember our hospital canteen would have a queue round the block to sign up for their xmas dinner days! The food was outstanding - and Mrs Doyle prided herself on building up the poorly patients with good food. And research shows it is a primary factor in recovery.
Oh , the NHS allegedly have low fat , gluten free and diabetic option menus too .
On my fifth admittance with pancreatitis , after my gall bladder removal , yet another indicator of the ongoing autoimmune issues I had going on inside that nobody spotted , ho , hum! the Nurse , whom originally pooh, poohed my unwillingness to tick my menu , got interested and tried to find me food.
We sat and looked through it , even on the low fat option it was all roast dinners and , yes, blooming shepherd's pie . We finally ticked , ' jacket potato' in the added info box , no butter , low fat spread please , no tuna mayo!! Extra salad ( no coleslaw) .
It came up under its cloche , I was starving , she brought it to me personally , like a child proud to show her achievements at school , the big reveal.......
One jacket potato , no toppings at all , not even cut rolling around a virtually empty plate , with , wow , two wet wilted lettuce leaves instead of one , a slice of tomato , no cucumber!!!
She cried!
My big concern was for the other patients ( and her, poor thing she really hadn't known when she told me off two days before just how bad it was) because this was a ward of gastric patients , many elderly with liver issues , one young woman with a compacted bowel. They were all happily eating their big dinners ( apparently created in order to help you build up enough energy after illness to leave hospital!!!) then half an hour later lying in bed curled up with pain or stomach cramps. Two ladies had , had their discharge delayed because of it. Nobody was seeing why.
Thank goodness for my OH , who has now been well trained to bring me in salads , soups and healthy snacks from home , because over the years the NHS has tried to starve me to death!
Glad you said "allegedly"!!! I have never seen such awful food as I have in the NHS! In response to a request for gluten-free food I got a plate of mashed potato, sweetcorn and peas. And that had been specially fetched by the ward assistant from the kitchen! When OH was having chemotherapy he got a plate of "savoury egg" - scrambled egg (or possibly egg powder) mixed with tinned tomatoes and some cheese. Vomit-worthy - that's what it looked and smelled like.
Urgh!!! I can picture it , and it's nearly dinnertime too!
My poor daughter was admitted to a Welsh hospital for treatment for breast cancer. She is a vegetarian and although the staff were very kind they simply didn’t cater for her. One offered to take the ham out of the sandwich and on the last day as there was nothing on the menu said “what are you going to do love” Love discharged herself.
The treatment was superb but the nutrition failed. This was a few years ago so maybe it’s improved. 🥂🥂
Last trip I had was in November , I would have to beat no , it hasn't , thank goodness for cool bags and Tupperware xx
Is there nothing left? 🥂🥂
Probably not ... The Gewuerztraminer is OK though...
Tequila sunrise Edith! Plenty of vitamin c and a kick with it!
Very much at the beginning when I was on 20mg - occasionally really a bit scary - but it has been at least three or four months since I remember experiencing palpitations. I'm guessing it disappeared when I started to taper.
Hi Sandra. I’ve always been very fit but since being on Pred, I’ve suffered from palpitations, tachycardia and arrythmia...in that order. Interestingly, I was better at the higher doses (GCA...40mg as my starter) than I am down at the 2/3mg, but I think that is quite possibly related to my relatively poor Adrenal function right now. I did see a cardiologist and Atrial Fibrillation was diagnosed last year. I was put on blood thinners immediately... very important as greatly reduces the incidence of having a stroke.
I totally relate to feeling isolated and anxious when my heart does odd things...especially in bed at night. Hopefully yours are just palpitations and nothing too concerning, but definitely follow through and see a cardiologist for your peace of mind. Anything to do with the heart is bound to worry us! Good luck and it would great to hear back at some stage how you are doing.
Thanks so much for your reply. Seeing a rheumatologist on Wednesday for the first time. A bit fed up with feeling as though I am dropping to bits!
I agree about being better at higher doses. I was diagnosed with SVT several years ago and until recently it has been satisfactorily controlled by Bisoprolol 2.5mg daily. But I'm now reducing pred, coming down to 7.5. and the frequency of SVT episodes has increased, as has their intensity, this was shown on my recent 24hr ECG. GP thinks more Bisoprolol needed but I want to see what happens when I get to 7.5.
I do intermittently sandrathecat, Have seen cardiology and found a small leaky valve which they say isn't anything to worry about - gave me propranolol as a 'pill in the pocket', use as needed, - but they're Beta Blockers and they exacerbate my psoriasis. Comes on more when tired and stressed. Worry won't help if you're are then do see your GP.
Hi Terri. When I had my heart checked I was told I had a ‘trivial’ leaky valve that shouldn’t cause problems for about 10 years. Not much comfort considering my father died after having an op to replace a heart valve. Mind you that was 27 years ago. Things have improved since then.
We sound alike Sue! Palpitations wake me up - feels like my heart is leaping out of my chest!
I'm sorry your lost your father so many years ago. My friend lost her dad whilst having the same operation.
I sincerely hope things have improved as my sister needs a valve replacement. She'll know next week if she's fit enough to have it - she has complications.
I’ve been getting an irregular heartbeat for a couple of years on and off. I have stopped taking Amitriptylin because it can cause this problem but still get it intermittently. I have had tests but they couldn’t find anything amiss. It is horrible though because it stops me sleeping.
Well done on spotting the Amytriptyline . Even my Rheumatologist asked me if I was on it because so many of his patients present with high heart rates and palpitations while on it.
I had been , but not by then unfortunately .
A number of other anticonvulsant and antidepressants can do the same , which seems odd , as the reason you take them quite often us to stop anxiety , palpitations and insomnia!!
I know Bee! I sleep so much better when I take it. Shame!
I agree with the others who have already commented. I tend to be prone to arrythmia, even a cup of coffee can set off palpitations. However, certain medications can too. I'd for sure check with your doctor and I agree a holter monitor worn for awhile helps assess what is going on as well. For me, my heart didn't skip or anything while I had the monitor on, then, soon as I sent it back, back to skipping and such. Aargh. My doctor switched me from Armour Thyroid to synthetic thyroid meds and it stopped. Then, recently I was on Naproxen after a surgery (to prevent unwanted bone regrowth) and that too set it off like crazy so medications can have surprising side effects as we all know. I have noticed my blood pressure is much higher since I've been on pred too. Ugh.
No palpitations. Have you been investigated, ECG, holder m monitor etc?
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