After just being hospitalized for almost 2 weeks and going through every test the hospital had I am now home and on 3liters of oxygen 24/7 for the first time in my life . Having never had any breathing problems ever before.
Ever since being diagnosed with PMR and going on 20 mg. of prednisone everyday since July 2017 I have had horrible breathlessness. I huff and puff after walking 20 feet. Found that my oxygen level goes down to 65% when I walk without oxygen. I get even more breathless each time Ive attempted to wean down my prednisone even by 1 mg. Also find that when I attempt to wean prednisone my brain fog gets much worse.
I'm 60 years old and wonder if or when and if I ever get off or even down on the prednisone if I will be able to go off oxygen.
My father had GCA and died at 83 this past November. He died after 1 year of taking prednisone at 50 mg. everyday... prednisone saved his eyesight (he had debilitating temple headaches)which is how they diagnosed him... but ended up killing him in the end .He had so many prednisone side effects. As we say prednisone is the best worst medicine!!!!
Anyone else have this breathlessness and severe brain fog?
Thanks to all of you for listening
Written by
carolpatriarco01
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Hi, carolpatriarco01, I'm sorry to hear about your Father, my condolences.
I was diagnosed with PMR & GCA in November and put on 60mg of Prednisolone. I had an overly aggressive taper down plan, where I experienced a flare, and that resulted in a dosage increase to 80mg. I am now tapering again and I am back to where I started in November, at 60mg.
I have complained about breathlessness the entire time! Both to the GP and the Rheumy, but neither seem concerned. However, to me it is quite disconcerting!
I am 63 and can't walk up a short flight of stairs or the small hills in Brighton without having to stop and catch my breath. My GP did a "Doctor Google" search a few weeks ago and found "breathlessness," as a listed side effect of Pred... So that was that, she didn't listen to my chest or check my lung capacity.
I can't imagine being put on oxygen, but you obviously need it (65%!) and it's helping, so...
I was definitely breathless at the high doses but it went away slowly as I reduced. I can’t remember exactly when but things were probably improving around 30 downwards.
You do sound like you are having an extra tough time - and although I have had breathlessness from time to time it has never been to that extent. Given that this disease is about vasculitis it is possible to be both about the illness itself and related to Pred dose as well. I am very sorry to hear about your father - but do remember you are an individual - and although we all share certain symptoms this illness seemingly has variable 'expressions' in each of us - or so it seems to me reading this forum - and most people seem to emerge from the 'tunnel' eventually and can get on with their lives. But nevertheless some people seem very 'unfairly' to more challenged than others - so hoping things improve for you really really soon !!
The brain fog is a pretty universal side effect of Prednisalone too. It cannot help that you lost your father and you believe it was precipitated by GCA and the prolonged 50 mg dose he was on. This will cause anxiety in the midst of your grief and make breathlessness more distressing. At the height of my breathlessness, I slept with a fan blowing into my face and I have my bedroom window open, no matter what the weather is doing. A hermetically sealed hotel window is my nightmare. I also have my position in bed elevated.
Did they explain the reasoning for providing you with oxygen? Do you have other conditions that contribute to the breathless symptom?
I am ok walking on the flat but hills and stairs are difficult.
I would really question the reasoning behind prescribing oxygen. Did they mean it to be a temporary measure. I could imagine getting dependent on it and feeling more of an invalid than perhaps is necessary.
I have heard of nightclubs providing oxygen for the dancers to give them energy and stamina - perfectly healthy people - how odd is that?
These are just my unqualified thoughts. The breathlessness for me decreased as I lowered my dose of Pred and the PMR inflammation got under control.
Sounds like the Oxygen was prescribed due to oxygen saturation’s of 65 % ( they should be over 92 % ).
For reassurance no one gets home 02 unless they need it on medical grounds as the risks can outweigh the benefits. Hypoxia can kill and oxygen doesn’t lead to dependency, you either need it because your blood oxygen levels are too low or you don’t.
Hi,
Sorry to hear you have been so unwell. Have they ruled out things like pulmonary fibrosis and pulmonary hypertension which can go hand in hand with auto immune disease?
Are they sure the PMR diagnosis is right and it’s not another disease mimicking it but affecting your lungs as well?
Since you are in the USA have your doctors not considered Actemra instead of pred if it is the pred that is causing the problem? Though if the breathlessness gets worse if you reduce the pred that makes that questionable too. Are you on any other medications?
Did they do any tests to see if you have large vessel vasculitis in the chest arteries? That could also fit. That would need PET-MRI or PET-CT (using a contrast substance given via an infusion, not just a plain MRI or CT).
Thankfully my instinctive concern has been put into more solid advice by those who know. What you are suffering does not seem typical of the PMR we know.
This must be so difficult, so soon after losing your father. It does sound alarming, and very hard to endure.
I'm no expert, but that is/was a very long time to be on such high doses of pred. Is there a good reason for that? There was a post from someone recently who had been on high dose pred for far too long. The Consultant, Rod Hughes, told her that her persistent headaches were a side effect of pred, and that they would improve once she began reducing. Presumably it's a different sort of headache - but I can't help wondering . . . .
Could it apply to breathlessness too? Brain fog is par for the course, and does gradually improve as the pred dose reduces. As do most side effects. But I have no idea about breathlessness.
I've found, with each pred reduction, that things might get worse at first, but will resolve after a while. They call it the withdrawal effect. Is there a chance that you might be able to reduce pred very, very gradually, whilst keeping on with the oxygen? Might it be more manageable to reduce by half a mg at a time? Very, very slowly. That's what I'm doing.
Lots of hugs, and hope that you are able to find a solution before too long.
So sorry to hear about your Dad. I have Gca and Pmr inam suffering with breathlessness after a 10 minute walk I have asthma also but it’s always been well controlled. I am on 20 mg prednisone I have never had shortness of breath like this went for a endoscopy to be told I have sliding hiatus hernia which is causing the breathlessness it seems to me we think we are being treated for our illness but my treatment seems to bring me more problems and anxiety as for brain fog I’m so embarrassed sometimes I’m just repeating myself or talkin* rubbish. Take care.
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