breathlessness: I’m just coming to the end of... - PMRGCAuk

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breathlessness

Missbisous profile image
27 Replies

I’m just coming to the end of taking 60mg and tapering down to 50 mg on Tuesday but am becoming increasingly breathless. Even gentle walking leaves me puffed out. Is this the high dosage of steroids or the GCA at its worst ?

Not due to see rheumy for another 6 weeks

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Missbisous profile image
Missbisous
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27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Breathlessness is mentioned as a side effect in the Patient Information Leaflet [PIL] - and it does say you should discuss with your doctor.

So please contact your GP..

Missbisous profile image
Missbisous in reply toDorsetLady

Thank you I’ll phone in morning x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMissbisous

Good..it might be just the Pred and will improve as you get lower … but always best to check..and do let us know how it goes.

PMRpro profile image
PMRproAmbassador

As DL says it is a side effect of pred, especially high doses, but do check with your GP that there is nothing else lurking.

SheffieldJane profile image
SheffieldJane

Definitely report this to your doctor. They will check your heart. If they tell you everything is normal as they did me, I found a couple of things that helped.

Sleeping on an incline slightly propped with the window open. In the summer I had a fan blowing across the bed which was pleasant.

Learning breathing from the diaphragm rather than up in the chest. You will find instructions if you google it. This has made me feel better and in control during long Covid, as well.

My breathlessness became intermittent as I reduced my dose. I use the techniques now to help better breathing post Covid.

Missbisous profile image
Missbisous in reply toSheffieldJane

Thanks Jane. It’s only just started this week. I’ll give the dc a call tomorrow x

Quintius profile image
Quintius

I started on 80mg and suffered from being breathless. It gradually got better as I tapered. I cant remember excactly when the breatlessness stopped. Maybe around 30 mg.

Missbisous profile image
Missbisous in reply toQuintius

Thanks that’s useful to know.

Quintius profile image
Quintius in reply toMissbisous

PS. Just to be clear. My experience was that breathlessness was a side effect of the high dose of pred; not the disease.

marrabone profile image
marrabone

I'm so glad you posted this. I was looking to see if it had been mentioned. I am suffering breathlessness too. I've tapered from 20 to 15 mgs (not in one go) and l'm feeling weak as well. Sometimes l do a sort of involuntary gasp inwards, rather like a toddler does when they've been sobbing. I will try to get an appointment. I have been feeling abandoned by my GP, in any case, so it may be a good thing.

Missbisous profile image
Missbisous in reply tomarrabone

Hi Marrabone - I was on 60 mg pred - now on 50 mg for past 2 weeks and really do think it’s the steroids that are making me breathless. I understand what you say about the gasps. It feels like you can’t get enough air in and when I spoke to rheumy nurse she said I had to breath in from the diaphragm as I was doing shallow breathing.

Also I feel like I am so bloated by the end of the day ( put 10 lb on since Aug and I’m sure it’s just fluid) that it makes a difference to my breathing too as I feel so “full up”. !!

Anyway. I have a blood test tomorrow and chest X-ray on wed. Be interesting to see what results come back as they are checking g for heart failure but I had an ecg only a month ago which was fine ….!

Will keep you posted - and make noise at your GP - thank goodness I did as was diagnosed with vertigo, then sinus trouble before another doc said I think may have GCA ..x

PMRpro profile image
PMRproAmbassador in reply toMissbisous

The ECG is a recording of the electrical system in your heart and heart failure (inefficient pumping) won't always show up if it is not due to electrical problems. For heart failure, they do something called an ECHOcardiogram, Different test altogether.

Missbisous profile image
Missbisous in reply toPMRpro

Oh ok. Didn’t know that ! Thank you for the great info as usual. X

PMRpro profile image
PMRproAmbassador in reply tomarrabone

"Sometimes l do a sort of involuntary gasp inwards, rather like a toddler does when they've been sobbing"

Everyone does - it is a natural physioloxgical reaction to perhaps less than ideal depth of breathing. It is a vagally mediated mechanoreflex - that means the vagus nerve gets signals to tell it you aren't getting your lungs inflate as much as they should so a deep breath is triggered to reset things. This happens every so often and normally we aren't paying enough attention to notice or are active enough for the lung inflation to be adequate to not trigger it.

This is in sciencespeak so maybe a bit dense but just to show I'm not making it up!

sciencedirect.com/science/a...

It really isn't anything to worry about.

marrabone profile image
marrabone in reply toPMRpro

Thanks for explaining that PMRpro. It's more the breathlessness that's concerning me as l think its possibly a little bit worse than when l had my PE. I feel quite exhausted after just a small job but then l suppose if l'm short of oxygen then that's to be expected.

PMRpro profile image
PMRproAmbassador in reply tomarrabone

Do you have any other symptoms similar to when you had the PE? When did the breathlessness start? Have you any other symptoms - swollen ankles for example?

Unfortunately, most people with PMR in the early stages of management could say "I've got symptoms of heart failure" - when it is more likely due to the PMR! It can be very confusing. And loads of us would say we can walk fine on the flat - tell us to walk up even a slight slope and it can be a whole different matter! Plus we don;t have to do much before feeling absolutely finished.

Have you changed your diet at all since starting pred? Some people find that salt makes them retain fluid when on pred - so cutting processed carbs and not only added sugar but also added salt and salty food is important since retained fluid can cause the symptoms too.

marrabone profile image
marrabone in reply toPMRpro

No, when l had my PE it was after cramping pain at the back of my left calf and breathlessness. There were no visible signs of a DVT at all. The GP sent me for bloods and l was called to go to A&E later that day when the results came through. I was given very little info about it but lots of tests were done and l was put on Apixaban. It was on my right lung. I still take a maintenance dose as the PE was unexplained. I have had swollen ankles for several years and my Mum passed with heart failure, so it is a worry. I was once by a GP that as long as my flesh in that area recovers quickly after being pressed, it's not a heart issue. My ankles are more swollen now, since starting Pred, but the test gives the same result as before, ie not remaining indented. I am very careful to keep salt, sugar and carbs to an absolute minimum and l'm eating very healthily, no processed food. I have 2 or 3 cups of tea each day but restricting my favourite strong black coffee to maybe one every 3 days. Other than that just plain water. The breathlessness has been there for maybe 4/5 days. I have felt tired since reducing to 15mgs 2 weeks ago. I still wake up with a bit of shoulder pain before l take my full dose in the morning at about 7-8pm. I was taking it at 2pm before, which worked well, but it was badly affecting my sleep.

PMRpro profile image
PMRproAmbassador in reply tomarrabone

It was annoying - even the cardiologists weren't interested. But there is no question - there was obviously some degree of innefficient pumping before and I was breathless walking up the small hill into the village. Why are you restricting your coffee? That is a diuretic - maybe it would help ...

marrabone profile image
marrabone in reply toPMRpro

I have been restricting it since starting the steroids as l thought it was a bad thing. You do have a point though about it being a diuretic.

PMRpro profile image
PMRproAmbassador in reply tomarrabone

The only reason not to drink coffee when taking pred is if it makes any heartburn worse. PMR takes lots of pleasures away - don't throw another if you don't need to!

marrabone profile image
marrabone in reply toPMRpro

You are certainly right there PMR! I will gladly go back to drinking it as it doesn't seem to cause any heartburn and l have omeprazole to take care of that anyway.

marrabone profile image
marrabone

Thanks for getting back to me Missbisous. You are on a much higher dose than me as l just have PMR. I'm not gaining weight in fact l'm very slowly losing it (l need to!). I'm trying to do the low carbs, sugar and salt diet and l'm sticking to unprocessed food. I expect your bloating is due to the high dose as well. I feel like l am a bit fuller in the face and neck but l'm not too worried about that. I had an ECG just a under a year ago after l'd had a Pulmonary Embolism. That came back normal but of course a PE causes breathlessness too. That had normalised until just recently though and l don't have any of the sort of pain that comes from a DVT. If l am lucky enough to get an early appointment l will let you know the result. Fingers crossed that you get some answers x

marrabone profile image
marrabone in reply tomarrabone

Just to update: I had a very thorough check up on Monday but nothing was showing up. Today a had a call that my bloods had come back showing a raised white count and also inflammatory markers. Something else too which l'd never heard of and can't remember. Anyway they are suggesting it is a chest infection of some kind , even though l am feeling well, or maybe just slightly fatigued. I have a weeks worth of antibiotics waiting for me, oh joy!

Missbisous profile image
Missbisous in reply tomarrabone

Well at least if it’s an infection you should be feeling better after the antibiotics!!

Had bloods done and shows higher levels Serum Alt. - liver. Do you think it’s the Methotrexate I’ve started - 3rd injection.

PMRpro profile image
PMRproAmbassador in reply tomarrabone

Mmmm - but raised white count and inflammatory markers could also suggest your PMR isn't under control.

marrabone profile image
marrabone in reply toPMRpro

I did wonder about that. I wish l could remember the name of the other thing that was raised now. I am just over 2.5 weeks into reducing to 15 from 17.5mg of Pred. I only notice slight shoulder soreness just before taking my meds on waking. I was hoping that was all going well. Once the meds kick in l have no pain at all.

marrabone profile image
marrabone

I hope so Missbisous! I've no idea about the Methotrexate as l'm quite new to all of this. I am sure someone will be along to advise you pretty soon though as everyone is so helpful here. I hope you feel better soon.

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