Symptoms: I have been very short of breath for a... - PMRGCAuk

PMRGCAuk

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Symptoms

rosie41 profile image
21 Replies

I have been very short of breath for a couple of weeks and was taken to hospital last weeks in case it is heart trouble. I have got to have some tests done.

I have had PMR for six years and am down to 6mg per day and wondered if anyone has had this problem with PMR

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rosie41 profile image
rosie41
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21 Replies
PMRpro profile image
PMRproAmbassador

What dose are you on? Some people develop breathlessness when on pred. But good they are checking it out.

tallgal profile image
tallgal in reply toPMRpro

That is interesting My husband has just finished 5 days of pred 40mg for serious breathing and wheezing difficulties. Hes also on a steroid inhaler now too but is still very breathless. Hes never had asthma before so it'll be interesting to see if the breathlessness goes as the steroids wane.

PMRpro profile image
PMRproAmbassador in reply totallgal

Did they just give the steroids? No antibiotic?

tallgal profile image
tallgal in reply toPMRpro

No antibiotic no They think the breathlessness may be heart trouble and he has to have an ECG when his chest is better. He had an irregular heartbeat.. It all seems a bit hit and miss to me but I'm not a doctor. I'm watching him carefully.

PMRpro profile image
PMRproAmbassador in reply totallgal

My daughter is asthmatic - had such a fight with the UK GPs when she was small, Our German GP had repeatedly tried to manage an attack with just steroids but every time on the the third day she was practically blue without antibiotics, she always developed a secondary infection and there was a really obvious pattern as to how it started. She missed weeks of school in the UK until I dragged out the oncall doctor at 7.30am one morning after they'd refused abx and he almost wet himself when he saw her! Almost a blue lights job. And he learned a lesson: mothers DO know a bit about their child! As an adult she was blue lighted to hospital after having an attack in the GP surgery that they hadn't sussed was pretty bad - she's a paramedic herself and the colleagues turned the sats monitor so she couldn't see it. The ambo arrived and asked had th GP given the rescue protocol - he didn't even know what it was "Oh, I think we have that in the fridge ..." The team was a paramedic plus non-qualified tech driver and even HE knew what it was and the dose! GPs and chests scare me!

tallgal profile image
tallgal in reply toPMRpro

interesting

Hi, I have both PMR & GCA and have suffered with breathlessness since I was diagnosed in 2017. I have had chest x-rays, CAT scans and a breathing test.. they find NOTHING! I blame the Pred. I have gone from 80 mg to 8mg in 2 years and 6 months. I still struggle on hills, stairs or if i walk long distances. Best of luck to you

tangocharlie profile image
tangocharlie

I get breathlessness around the 5 - 6 Pred mark. I've been throughly checked out and can therefore only presume it's due to inflammation in the airways, because if I up my dose of Pred the problem goes away. This has been mentioned before on here and I wasn't the only one with this problem. I had the breathlessness before being diagnosed and Pred sorts it out, so I think it's due to the PMR rather than the Pred. Who knows, doctors are stumped but ruled out other things.

Dambusters profile image
Dambusters

MY breathing problem got worse as I reduced doses BUT I did have a breating probem anyway - overweight and heart problems.

Fiesty profile image
Fiesty

I have had this since I was diagnosed with PMR three years ago. I’ve had everything checked out and there’s no problem except the PMR. Rheumatologist laughed about it said that it was not possible to come from PMR. But obviously it does have something to do with it.

SheffieldJane profile image
SheffieldJane in reply toFiesty

What a charmer!

PMRpro profile image
PMRproAmbassador in reply toFiesty

I was pretty breathless with PMR - and it improved with pred ...

Fiesty profile image
Fiesty in reply toPMRpro

Thanks Ya’ll. Glad to know it’s not just me.

rosie41 profile image
rosie41

Thankyou to everyone for your help. People look at me as though I have the virus when they hear me struggling to breath .

The GP heard me on the phone and called an ambulance. I have got to have heart tests.

SheffieldJane profile image
SheffieldJane

I just saw this and thought that I would mention that I went through a phase of oxygen starvation during PMR where I felt like a goldfish gulping for enough air. I remember discussing it on here more than once. I ended up sleeping propped up with a fan blowing on my face. I think it was Pred induced. It went away and like with a lot of scary symptoms I put it out of my mind. All cardiac tests were normal except raised BP which Is treated now. I felt it slightly tonight and felt very doomy. My nose and throat felt as if they were thickened/ swollen.

Blackcatlover profile image
Blackcatlover in reply toSheffieldJane

Oh Sheffield Jane I’ve felt the same way. Was sure I had heart problems but with the covid crisis I didn’t know what to do. Have taken it easy for a couple of days and feel slightly better but still feel like a goldfish out of water when I walk up stairs or walk up hills. I think it’s pred withdrawal, adrenals still not working up to snuff and my 74 year old bones. PMR takes a toll on us! Hope you feel better!

SheffieldJane profile image
SheffieldJane in reply toBlackcatlover

It used to come over me when I went to bed, no exertion at all. I wondered if I was allergic to my linen sheets or something. I changed all that and scented products. Perhaps just part of being systemically ill ? Enlarged cells in the blood vessels have got to have an impact on all functions.

PMRpro profile image
PMRproAmbassador in reply toBlackcatlover

If you think you have cardiac problems you do the same now as you should anyway: call the emergency service no for where you are.

Those are signs that must be taken seriously and checked out - if they find nothing that is wonderful. But they are symptoms of angina - you don't always have pain as such.

musicality profile image
musicality

I too have been on Pred for a very long time with loads of unpleasant side effects happening over time. I developed breathlessness, and after tests now got to have a heart op - Pred is very toxic, but unless offered something else what can one do? New drugs are available, but not everyone is lucky enough to be offered them. Steroids only cost pennies each, the new drugs are ultra expensive.

In a DVD featuring a doctor, they said PMR causes achy muscles, I had to laugh! I don't think so - if you ask anyone who has had/got it, ones muscles hurt like hell, and if you move your arms the wrong way it is agony!

PMRpro profile image
PMRproAmbassador in reply tomusicality

What heart op must you have?

To be honest - if moving your arms is that painful then it is likely have something on top of the PMR. And you aren't on the right dose of pred.

You have probably been unlucky - for the vast majority of patients PMR DOES cause achy muscles. And if you mean the "You are not alone" DVD - it was made by patients too. Who all had PMR.

winfong profile image
winfong

I had shortness of breath (dyspnea) early on, as part of general constitutional symptoms. Prednisone helped a lot, but I've had it return somewhat as I try to taper off. I have LVV, which can have an effect on the lungs - "breathlessness, wheeze, dry cough or coughing up blood."

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