Hi . I am 5 years into GCA and am down to 5 mgs Prednisolone. I was on 4.5 mgs until a week ago when l realised l couldn’t cope with the fatigue, lower back pain ( stenosis) and weak heavy legs any more so l went back up to 5mgs. I have felt a lot better but something very strange and scary has started to happen each time l eat. It starts with fluttering and palpitations in my chest that feel like they come up into my throat. I feel weak and wobbly and as if l am having a panic attack. Eventually after a couple of hours, maybe longer maybe shorter, it subsides. I have been to my GP who tested me all over and couldn’t find anything wrong but has booked me for an ECG at the end of this week. Meantime l’m getting really scared. I don’t know what is happening, is it because l’ ve increased my press ? Should l come back down to 4.5 ? Has anybody else experienced this ? Would be very grateful for any input. Thank you all.
feeling weird after every meal: Hi . I am 5 years... - PMRGCAuk
feeling weird after every meal
Probably adrenal glands not working correctly as yet -so body struggles when you do something that need a bit of extra cortisol -and that can include digesting food
See this for more info - and maybe discuss basal cortisol test with GP
healthunlocked.com/pmrgcauk...
Much of what you describe is typical of low adrenal sufficiency.
Stay at current dose -chopping and changing won’t help -it’s usually a matter of very slow tapering, time and patience
thank you for your advice,it makes so much sense when you put it like that, to be honest l’d never thought about the good old adrenals. Must have another word with my GP about this cortisol test. Mentioned it to him a year ago but he said no not yet. thank you again .
The dreaded deathly fatigue strikes again. Your adrenal glands object to you waking them up, they were quite happy acting like Sleeping Beauty.
Thank you for mentioning adrenals. I honestly never thought they could make me feel like that, but now it makes sense. Must get it sorted. Thanks again .
I felt like a zombie!
can you refer me to any research on the fatigue that has come on for a year now after tapering off prednisone, my gp said the same as she did about the pulsatile tinnitus, "you get used to it", as I become more of a sixteen hour a day sleeper when I was only sleeping at night a year ago, when I started tapering Pred. need to convince a very learned younger physician
Have you asked for a basal cortisol test -easily done in GP surgery-which if it raises cause for concern can lead to ACTH test.
I did ask for one, about 2 years ago when l was down to 4mgs but my GP refused, said there was no immediate need for one. Secretly l suspect he didn’t really know what l was talking about. However, that was a while ago so when l next see him l will ask again. I think he has probably been on a course or something because just lately he seems far more knowledgeable about Pred and it’s side effects etc.
Good he knows more about Pred ..
I honestly DO wonder if rates of PMR are increasing. Probably because I have become so aware of it nowadays but, just as an example, within a group of 5 friends/acquaintances 4 now have been diagnosed with PMR ie 80%. 3 of those within the last year and 1 who has suffered for some years. Are Drs suddenly becoming more aware for some reason?
Maybe, good if they are. But as you say, you are aware of it as well.
Autoimmune disorders in general are on the increase
Does anyone know why?
"Current evidence implicates the momentous alterations in our foods, xenobiotics, air pollution, infections, personal lifestyles, stress, and climate change as causes for these increases."
pubmed.ncbi.nlm.nih.gov/364....
The human race has fouled its nest ...
many thanks, good ideas.
thanks again, tried to get basal cortisol test but she is not she said aware of any studies indicating that the test would be called for with only the symptoms of exhaustion onset after d/c prednisone. Seems I need to become a med pub researcher to get this test.
Well if not your adrenals struggling and causing it, is she testing for anything else?
A simple basal cortisol test would probably be cheaper than a raft of others.
Don’t know of study -but maybe have a look yourself -and PMRpro will see this so she may be aware of something but she’s a bit busy today
Value of the basal cortisol test:
pubmed.ncbi.nlm.nih.gov/286...
It is a bit wishy but this is the study done in Leeds which surprised them at how many patients struggled with return of adrenal function
endocrine-abstracts.org/ea/...
I find it a bit concerning that a doctor is unaware that even patients on low dose pred can suffer adrenal crises, it isn't restricted to patients entirely off pred. SheffieldJane was considered by endocrinology as being sufficiently at risk to be supplied with a resscue pack and she was nowhere near off pred entirely.
Thanks - the Leeds one is worth keeping -snd quoting.
I suspect it is coincidence that adrenal insufficiency caught up just as you went back up with the dose. It can lead to arrythmia and eating can be a trigger for an arrythmia. The ECG will only show anything if you happen to have an episode while hooked up - I never do!!!
Do you happen to have a smart watch or fitbit? I use a pulse oximeter to see what my arrythmia is doing - you see the way your heart is beating on its display and your heart rate. Not sure how successful it would be at present but the best thing is to call 999 when it starts and hope an ambo gets there before it stops. They carry a 12-lead ECG and can get the evidence quicker than waiting for a GP to grind the mills of the NHS. Always worth a try.
thank you PMRpro, l will do as you suggest. I do have an oxymeter and it has been showing erratic heartbeats when l’m having a “do” l didn’t know whether to call the ambulance out but l will the next time this happens. Thank you again
That is what my UK GP suggested I did but I never bothered. I didn't have an oximeter in those days. I regret it - when it was eventually identified as a.fib and treated it was a relief even though it hadn't been that bad then.
Forgot to say - once it is identified and they treat it, it is just a case of patience. If it is a/fib then it isn't very dangerous unless the heart rate gets very high. Mine never does so it is just a pest at present but for 7 years it has been well managed.
Have you had a Covid jab recently?
no l haven’t had one since March of last year, that was number 5. I am now trying to have another jab, the Spring booster they call it; but l am hitting a brick wall. The usual company that has been giving out the vax have ceased doing it and my gp’s surgery don’t seem to know what is happening, and are refusing to take appts. for a booster , so, not too sure what to do. My local friends are all in the same age bracket and they too seem unable to get a Covid jab. Not good at all.
Referring back to this a/fib, what can they do to help it along ? Is it medication or do you just have to live with it until the adrenals start to behave themselves.? I am getting a little anxious because l am booked to go on a short coach holiday next week and l am wondering if l will be able to go.
if you are in England have a look at this -
nhs.uk/conditions/covid-19/...
Booked mine online this afternoon (but you can ring) took me just a few minutes.
wonderful, have got myself booked in straight away May 5th at 4pm. Thank you very much
Good -Two days after me!
Many thanks. Didn’t know about this and have bked mine.
I just wondered if it could have anything to do with the arrythmia - it has affected some people.
Mine has been controlled well with medication until a few months ago and a Covid jab! Mine is due to the PMR though, not the adrenal function. The most important thing is an anticoagulant in case clots form and are disturbed by the heart beating funny, Mine has been quite bad recently but I drive up to my friends in Germany, 6 hours each way, for Easter weekend and was fine. I wouldn't want to go on long walks though as I feel quite ropey at times. So it depends on what sort of coach holiday it is and how you feel.
the information you are giving me is second to none. I feel so much calmer already. The coach trip l have planned is just 3 hours away at the most, to the Lake District where there will be walks to go on , or coach trips if l don’t feel up to it . I really need this little break, l lost my husband 6 months back and life has been a struggle since then , what with money and solicitors and maybe losing my home, so l really need a change of scenery , just for a few days. And now all these problems with the adrenals and maybe my heart……… Life can be tough sometimes can’t it. Anyway, thank you once again for all your info and help
Sorry to hear about you losing your husband and all that has happened since. Glad your mind is now at rest to enjoy your short break. 💐
My husband died 18 months ago - I know exactly where you are coming from and although I don't have any threat to the roof over my head, I was quite apprehensive about whether the considerable drop in income would make a difference to me. The trip to Germany was my first expedition anywhere - bit of practice for the UK at some point! Have a lovely time in the Lake District and hope the weather is kind,
Thank you ……. I’m so sorry for your loss. It’s such a tough time for those of us left behind. It’s all the legal things l find really hard, things that you thought had all been sorted out before his passing l suddenly find have not. Thank goodness l have some family support, even though they live far away . It’s been a long dark winter for me but, now the birds are singing and it’s Spring ….. things are looking a bit brighter.
I have the joys in 3 languages! At least I am fluent in 2 ...
wow.. very impressed. I know about 10 words in French and slightly less in Italian ( my favourite language) but am very fluent in Yorkshire 😁
Italian is my bete noire - I live in a German-speaking region so it doesn't greatly matter as it is a legal official language. Though Italian officialdom isn't so convinced ... I can have a conversation with my cleaning woman who is Albanian so basically Italian-speaking as a most such migrants. I understand it a lot better than I speak it - provided it isn't a bizarre regional accent spoken at 90 mph! Luckily, for many official things they provide a service called the Patronat who provide bilingual and online help. Thank goodness!
You mention your arrhythmia is due to PMR. Do you have any information to share with me about this? Thank you
Like what? The autoimmune disorder underlying PMR inflammation almost certainly damaged the sinus node, the cells that govern heart rate. The symptoms started about the same time as the PMR stiffness so it wasn't due to pred. I thought so - and the local arrythmia specialist was of the same opinion
medlineplus.gov/genetics/co...
Thank you for your time. I am very new and unsure about my diagnosis of PMR/GCA. I know I will learn more and have better health from those that are living each day with its reality. I read as much as I can but you and Dorset Lady cut to the chase and provide such great information. I am surprised with each post how complicated these diseases are and how amazing folks carry on. I feel like Ive jumped into deep ocean waters and I don't have much time to strategize before the next wave comes.
Don't worry - you will get the hang of it. In a year you will look back and be amazed how far you have come and wonder why you felt so awful at the time. I promise!
If you haven’t already, please have a read of this -and yes it can be overwhelming at the beginning. But as PMRpro says as you go along you will understand more and learn to cope and you will improve. Just take each day as it comes -and if you aren’t sure about something -ask . We’ve all been there -and it’s why we are here
Have to admit PMRpro, I did wonder how you would get on with your long drive recently. Glad to hear that all went well.👍
It was lovely - really enjoyed it.
Hi, I suffer with palpitations (SVT Supraventricular Tachycardia) anyway and they're worse at higher doses of Prednisolone. Having said that I've also found that any change in dosage, up or down, seems to set them off again for a few days after which they hopefully settle down a bit.
Thank you for your reply Pusph, strange for me to say but it’s kind of comforting to know that there are others who suffer from these weird events. I am in the early stages of learning to live on my own for the first time in my life and to now having to experience these frightening experiences alone is really scary. I’ve been taking Pred for over 5 years now and thought l’d been through every side effect possible, but this is a new one on me. I once counted how many side effects are mentioned on line and there were 72 of them. ….. l’ ve now found number 73 😂
I have the same and have been diagnosed with afib, the two conditions came together. I am on 2.5mg pred now and on anti arrythmics and anticoagulant for my afib. Not pleasant but I get these flutterings mostly when I wake although I do get some nasty episodes of afib as well
thank you Karen Deena, it helps so much to know there are others experiencing the same as me. It really makes me feel so much better.
Absolutely, it's always reassuring to know that you're not the 'only one' isn't it, especially when you live on your own as I do too!
The official figure is 84 - and we have added a couple ourselves! But honestly, no-one really gets them all,
I'm also on my own - not even family in the same country as I live in Italy and the girls both work in the NHS in the UK. Atrial fibrillation is a bit of a pain at times but don't get into too much of a bind about it - funnily enough it is my non-cardiology healthcare professionals who worry most about it. It isn't life-threatening, just an inconvenience at times,
This is a good article (New Zealand has some excellent information about a lot of things)
heartfoundation.org.nz/your....
Some people never notice they have a/fib, my husband was in almost permanent a/fib, I only notice it if I need to get something done that involves standing for long or walking when it is happening - sitting at the computer and even driving isn't a problem at all. I rarely bother to go to the hospital unless it is fast for me - over 140 for more than a short time really. And then I call the emergency services. I have discussed it with my cardiologist and she is as relaxed as I am! A few days before my husband died I woke with a heart rate of 190-ish and called for an ambo - 2 ambos and the emergency doctor turned up on blue lights! They took me in, I got a few infusions over the day and was sent home at 3pm. It was decided it was probably due to lack of sleep/exhaustion and the stress and that was it. No repeat.
And mine was caused by the autoimmune part of PMR having damaged the sinus node, the cells that govern heart rate. Having been on pred as long as you have, it is quite possible that it isn't the pred - at our age it is a very common complaint with 1 in 10 of over 80s having developed a/fib by then and a fairly recent study found it is more common in people with PMR as well as other rheumatic disorders. It is getting more common as the population ages so you aren't alone! Age is the greatest risk factor for a/fib.
that’s amazing reading, quite a lot of info to take on board but well worth the read. Thank you, l will print it off and refer every time l need reassurance or information,
I am on my own too and really struggle with the anxiety associated with an afib episode. Mine usually start in the night as well even more scary.I admire you and how you deal with it
thank you for your kind words. I really don’t like living on my own and am very nervous at night time but there’s no real alternative is there. Just have to try and get used to it. I agree with you that it’s really scary when you feel ill during the night. I put the tv on and try to concentrate on that until things calm down a bit.
No it’s not easy- my mum could never be on her own.
My late hubby was in Armed Forces so I got used to it from early days in our marriage -and in later years he spent a lot of time in hospital.
When you are healthy it’s not too bad, but when you are ill yourself it can be concerning - but we just have to get through it. At least we have mobile phones and 24hr TV (if required) ..
Take care🌸
If you are really unhappy about it, investigate the community alarm services available near you. If there isn't a council-run one there are often private ones.
gov.uk/apply-for-community-...
I had one for my husband before he died as I was wary of going out even to shop in case he fell and in fact once I didn't hear him falling in his room at night but he pressed his alarm and the call centre called me on my mobile! They held a key for access so could get in without anyone opening the door if I was out.
I have also been used to being on my own on and off all our working life and I actually missed it when he retired. Lots of compensations being on your own but being ill and alone is a bit wobble-inducing.
actually one of the first things l did was invest in an alarm device from an advertisement. It’s £19.00 per month but worth every penny and it’s good to know help is just a push button away. I have also got one of those Key banks outside front door with a code for those that need to know. I just have to keep reminding myself to take the key out of the front door so they can gain entry. It does make me feel a bit safer at night, but l don’t think l will ever get over being alone. After 55 years of company, well, it’s a big bite to chew. I am getting used to being by myself in daylight but when nighttime comes it’s a different story.t.g for 24hr TV. I am just so thankful, and extremely grateful, to have found this amazing forum . It’s a true lifesaver. Thank you
Yes, I agree, it's one of the disadvantages of living of one's own, Alwynk. That's why it's so comforting to have this pretty amazing forum to which we can refer🤗
I agree wholeheartedly. This forum is certainly a lifesaver as far as l am concerned. Where else would we turn to if it wasn’t here.
Your post has been most interesting. I have been struggling with overwhelming fatigue each time I have anything for lunch! It seems weird and I mentioned it to the GP who suggested low carbs. But stuttering adrenals makes complete sense. I also have Afib episodes now and arrhythmia. All since starting Prednisilone. I saw a cardiologist who asked me to get a little device called a Kardia. You can get them on Amazon. It is about £100 and works with a smart phone. It is more accurate than a BT monitor and records your ecg. You can then show this to GP or who ever. As a result of this I have been put on blood thinners and have a pill in the pocket for Afib episodes. I find it very comforting. I take it everywhere with me and tucked into its little wallet are extra pred and beta blockers. The cardiologist explained to me that I may never have another episode of what I described to him and would probably not have one while linked to an ecg monitor arranged by him. This has proved right but because of this little gizmo I have been able to show tracings of Afib episodes and any arrhythmias.
I think you should go on your holiday. You will be with lots of lovely people and get outside your concerns. It will do you a power of good. Let us know all about it and what it was like for your adrenals!
thank you Ridge for your very interesting reply. A lot of the things you mention seem to ring true with me, especially the a/fib bits. I’ve experienced ectopic heart beats and flutters had ECG tests and monitors, all have come back basically normal, so l really like the idea of this Kardia device and am going to buy one asap. I am sure it will help in discovering what is going on in there. I’ve decided to go on my little hols and surely will let you all know how l got on. Fingers crossed for some sunshine 🤞
You don’t need to sign up for the monitoring. I didn’t for a long time because I didn’t want to become obsessed! A friend never did but found it useful to show her cardiologist who had also recommended it. She has a serious heart condition nothing to do with PMR. I also have ectopics which are not serious I believe and there seems to be two types of Afib? One when you know cos your heart rate is 155 or more with fluttering and one where you are breathless climbing the stairs and you just think you ought to get fitter! I am very ignorant though so please take in the advice of your GP and those more knowledgeable.
Happy holiday.
Have got one ordered, delivery due tomorrow ! All I have to do now is to contact son number one to help with the instructions. I’m hopeless at those.
That is basically fast and slow a/fib - when I had it diagnosed originally it was a drug reaction and up to 230. Luckily I was in hospital at the time. Some time afterwards I developedslow a/fib - periods of fast heart rate of IRO 130+ would be followed by bradycardiac episodes where the heart rate went below 40 with periods of up to 7 secpnds pause. That was sorted with a pacemaker once they saw it - I'd told them something was going on but they never saw it. Usually my episodes lasted an hour or so and were well managed with medication although a pill in the pocket never helped! Then the Covid bivalent jab woke it up good and proper and nothing improves it. It has calmed down in the last few weeks but still a real nuisance. Maybe I'll be offered an ablation on Friday.
OMG 230! I think the highest I’ve ever gone is 180. That must have been scary. I have only had 3 noteable episodes. First lasted about an hour. The second three and the third 6hrs. The beta blocker did nothing as far as I can see. I was told to take a second after 6hrs as that is when they metabolise?. I ended up feeling like road kill so when GP suggested I take them daily I strongly objected. I’m keeping off alcohol not that I had a lot anyway. Each time it has happened I had upped the pred to 10mg a few days before. Avoidance is my biggest hope and get off the pred.
I think you sound very chilled and I’m full of admiration as I have been quite scared although I try to stay calm at the time as this is best. Deep breathing!
I hope what ever they decide for you it will be good. They are very practised these days. Please let us know. Honestly your wisdom is so important to all of us we would miss you if you had to take a short break.
While I was writing this a message came in saying to book the 6th? Vaccine? I so don’t want to. Every time I get set back. When I said this to the Rheumy he said he wasn’t going to but I think he is probably early 60. I guess it is up to the individual.
I think betablockers work better taken regularly - they worked well for me for 7 years and I don't have any side effects. Things have changed with ablation now - 8 years ago they weren't outstanding with radiofrequency techniques but cryoablation is much better. They can cool the area before freezing it and they check they are in the right place - clever!
Well that’s comforting too. I asked an ecg technician how they do an abalation. His description of timing and hit and miss did not impress!!
That isn't how I read the description of the protocol! It WAS a bit hit and miss with radiofrequency ablation I think but the concept that the area involved is cooled and tested before the final step of cryotherapy makes it more likely they are dealing with the right bit, It also depends on the type of a/fib.
Interesting about not wanting the Spring booster. A friend of mine who has sarcoidosis (dormant, I understand) and an ectopic heartbeat told me recently that she's more or less decided not to have the Spring vaccine but will have the one issued in the Autumn. I must say, I feel similarly. I reckon the uptake will be less this Spring.
I am not having the spring one, the last gave me a 30 hour afib episode with a Very fast heart rate
I’ve booked mine for early May but honestly don’t feel keen. I’ve been on pred for two years and am now down to 7.5 mg so hopefully (🤞) am less immunosuppressed than previously? I don’t want to rock the boat….feeling somewhat dubious at the moment even though I’ve been very keen to have all previous jabs and haven’t had bad side effects…🤔x
Actually l feel opposite to you, personally l can’t wait to have my next vax, l always feel much safer then, not sure exactly why but l feel very wary going out without any protection and still wear face covering and use hand cleanser everywhere. So far l’ ve never really had any bad side effects from the vax, touch wood, but l still feel l need protecting, Covid is still around and now there’s this new one from India reaching our shores so, can’t be too careful now
I guess we’re all different Alwynk 😊
Most of my friends and family have had Covid, and so far I haven’t 🤞so I suppose there’s an element of overconfidence 🤦♀️I still do the hand washing and sanitising etc, can’t see me stopping now, it’s so sensible for all kinds of viruses and bacteria etc. But I have to admit I don’t wear masks in most circumstances now. If we have another serious wave I’ll turn to FFP 2 s which are so much better than blue surgical masks.
Enjoy your holiday 🌺xx
I have my Fitbit set to notify me of any A. Fib. I was diagnosed with suspected A. Fib 10 years ago though never any proper evidence. I've been on blood thinners and beta blockers ever since. My Fitbit has never reported any A.Fib since I got it a year ago. I think doctors like to err on the side of caution. Happy I'm protected by the drugs but wish I could still take ibuprofen - I'm not even allowed to use the gel - and your travel insurance rockets when you're on blood thinners.
very interesting post, thank you. A bit surprised about travel insurance, didn’t know that! The cost of that is enough as it is, dread to think what it will be like if l need further meds.
try eating organic foods meat, milk extra. See how you do on that.
there are so much chemicals in the food
that is so true, l sometimes wonder if it is something l am eating that is causing this weird event, for the past week or so it has happened every evening within half an hour of me finishing my meal and lasts for up to 90 minutes, sometimes more, sometimes less. I eat different things each day so l can’t put my finger on any one item and point the blame. It’s fast getting to the stage where l am dreading dinner, and am eating much less than usual. One way to lose weight l suppose, but not pleasant. Thank you for your very interesting post.
I have. It usually happens only at dinner, not breakfast or lunch and sometimes even as I make dinner. It got so bad I dreaded dinner times.I was off prednisone for a couple of months when it started but it is very frightening. Because I also felt weak and faint when it happened, I had to wear a heart monitor for two weeks and it showed lots of irregular beats, most of them benign.
This led to a cardiologist appointment because of some ventricular tachycardia.
I think prednisone caused a lot of anxiety, ergo, heart palpitations but I learned an important lesson. Don't assume everything you feel is prednisone withdrawal related. I had fluid around my heart (cardiac effusion) and an echocardiogram also showed mild heart failure. A follow up has shown the fluid is lessening. So doc says could have been a virus or the Covid vaccine. Hopefully the heart failure issue will also heal itself.
Chances are this mealtime thing will go away as mysteriously as it came. I do think, in my case, it was anxiety from long term prednisone use.
a lot of food for thought in your post Logic. I feel that certainly some of what you have said could apply to me. All l am striving for now is to find out what is wrong and see if it can be put right. I do think that l am probably blaming it all on prednisolone, but who knows? Thank you for your interesting post.
enyoy the break Alwynk. I'll give you a virtual wave as you pass our farm on the A66. we have a wonderful view across the greta valley of people bustling both ways but no need to go anywhere as we live and work the uplands in probably one of the most beautiful parts of the uk. we all struggle to understand the side effects of our condition and medications so you aren't alone.ultimately we all end the same hoping for improvements and for baffling effects to go away.
thank you for your post, l will certainly look out with a virtual wave as l pass your farm. Know the A66 very well and often marvel at the farmers coping with the sometimes atrocious weather up there. Beautiful scenery though. I certainly don’t feel so alone now, everyone on this forum is so encouraging and understanding. It helps immensely, thank you
Are you near Braithwaite cycli? Had lots of lovely stays there about 25-30 years ago.
bowes near barnard castle 1000ft upland farm overlooking half mile of the greta
Of course, I remember now that you've mentioned Barnard Castle before. Lovely part of the country.
treat tonight. Going to see Kiki Dee and Carmello Lugerri at the Wtham in Barnard Castle. Guest tickets as they are friends of mine. Looking forward to catching up. Carmello could have been a pro cyclist but chose music. We rode together in my cycling club for many years. He is a wonderful guitarist with his own recording studio.
Wow, what a special night for you cycli. Hope that you have a fab evening with your old friends. Nothing better for lifting the spirits. For me, a rendition of 'Amoreuse' would make the evening! Have a really, really lovely time.
Just back and was a stellar perfomance. Everybody just loved them. I can't tell you just how good he is and like Carmello I had a crush on Kiki when a teen. It's so nice to have them as friends. They are straight on to Scotland now. Check their facebook page for shows around the country.
I didn't need to check their facebook cycli, I just googled his name and was magically given the details of their concert in Bury in October, that's only 5 miles from us. We'll go! They've both had some high profile songwriting partners haven't they? So glad that you had a magical evening, that sort of experience does us all good doesn't it?
Hi Alwynk. My husband is on 2 mg pred at the moment. After the evening meal he always slumps with exhaustion. Sometimes before he even finishes eating. He says he feels like he s been hit with a cricket bat ( not that he ever has had this happen ) It is utter exhaustion. The fatigue and the heavy legs and weakness are all symptoms he has complained of. He has had check ups for heart after a scary panic attack last year. No heart problems though, thank goodness. He is now on year 3 of being diagnosed with P M R. I wish you well and hope you can be reassured by your G P..
PS My husband hates taking tablets and is determined to keep on a low dose , which sometimes seems a bit counter productive when he is in a lot of discomfort.
Re your last paragraph -yes it is counter productive if hubby isn’t taking enough Pred to control his PMR. Bit pointless really -but no doubt you’ve told you’ve told him that !
I was diagnosed with PMR April 22 after suffering the stiffness for 2 months, then with GCA June 22. Had an episode of arrhythmia A Fib just after the PMR started, and have several since. I have realised that they come overnight after eating an evening meal and slumping in my chair. They last about 12 hours and I feel rubbish for several days after. After not being able to get to a doc or hospital while they were happening, I bought a Kardia ecg device which is simple to use and records the ECG and heart rate and can be emailed or shared with a doc. Am now struggling with beta blockers prescribed to help the A Fib, feeling desperately tired with various other side ffects. I didn't know that A Fib seems to come along with GCA or PMR. I'm at 6mg Pred and don't know whether all the tiredness is coming from adrenalin insufficiency or the BB.I do hope you get a break and change of scene, Alwynk. Good thoughts.
"I didn't know that A Fib seems to come along with GCA or PMR"
It doesn't necessarily but we are the right age group to develop it. If the betablockers don't suit you there are other drugs that can be used. I find magnesium helps a lot and have you tried changing your eating habits? Maybe try eating your main meal at midday and lighter in the evening and instead of slumping in the chair, go for a walk after your meal.
Thank you for your post. You seem to be having the same problems as me, l don’t understand why an evening meal should create such unpleasant feelings, l feel l could possibly cope with them if it was after breakfast, or lunch, but evenings is not my best time of day. Have ordered a Kardia ecg device, due for delivery tomorrow, so hopefully l will find out what is happening, in fact as l am typing this l can feel another “attack” coming on. Looks like l’m in for an uncomfortable night !!
O
It is surprising what can trigger a/f - and it may be worth keeping a food/activity diary to see if you find any common factors.
michiganmedicine.org/health....
that’s a good idea, will give it a try. There must be a common denominator, somewhere. Something must be causing this, surely, but what ?? l WILL get to the bottom of this !
Sometimes there isn't a trigger - I know mine changed with the bivalent vaccine and after 5 months it is starting to improve - just as I am being considered for an ablation!! But there are so many mechanisms that can cause it and then to find the thing that maybe affects one of them ...
Alwynk, I might have missed something in this long thread but what you describe in your original post could easily be esophageal spasms. I have had that, sometimes quite painful and it often feels as if it is right at your throat because it is! Hoping you get it sorted soon! Keep us posted!
thank you for your suggestion and l will mention it to my GP on Friday. It might just be that, as you say, to be honest it could be any one of a number of things but whatever it is , it can go away soooooon !
It’s lunch for me that sets me back. It takes me at least a couple of hrs to recover. My heart rate feels as if it has gone up but on checking with the Kardia it is not in arrhythmia or Afib. I should do without lunch perhaps goodness knows I don’t need it but I’m so greedy!! The evening meal is fine?? Oh it is so confusing.
it certainly is Ridge, today l get my Kardia, so hopefully l might get an answer to all this
Do report back and say what you think
disappointing news Ridge, the Kardia arrived ok but it is incompatible with my phone, so it’s on its way back to the company and l am now scouring the internet for another type. So many to choose from. But l am determined to find one……
Hi - I had similar with heart - did more blood tests, ECG etc... now found my thyroid is overactive. I also have Adrenal Insufficiency OF COURSE. Maybe you could ask about Thyroid. Sorry you are experiencing these awful feelings.
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