OUT OF BREATH

[jevuki]

DOES ANYONE HAVE TROUBLE CATCHING THEIR BREATH? HAPPENS DURING SLEEP TIME AS WELL

[Toenti]

Hi Jevuki, yes,I have been out of breath a lot in the last few months. The worst of it was during a spell of atrial fibrilation. Once that was dealt with,it got a lot better. Still out of breath a lot and sweating profusely.((on my head only) I have to wear a wig due to hairloss(from prednisolon) which does not help. Sorry,I can't give any advise on how to deal with this. Maybe PMRPRO can come up with some ideas.

All the best!

,

[jevuki in reply to Toenti]

Thanks Toenti, yes I sweat profusely as well comes on with a vengeance and then leaves, happens all day and night my head because wet and I drip off my forehead....its crazy and I am long over the change of life (lol) I asked the Dr and he told me Prednisone would not cause shortness of breath but I have been researching and they say it is a symptom of.

[piglette in reply to jevuki]

I felt like I was in a tropical jungle in the rain due to pred. It has improved a bit thank goodness, now I am on a lower dose. What is really annoying is that I sailed through menopause with no symptoms at all.

[Hidden in reply to piglette]

Hi piglette

On higher doses of Prednisolone 18-20mg I used to sweat in a very specific way, in the flexes of my elbows, then a bracelet of beads of perspiration on my wrists, followed by a triangular patch down my back from my shoulders to my waist, l called it Auckland Syndrome as that's where we were when I first experienced it & boy did it to debilitate me!

I had hot flushes during the menopause but this was totally different!

Mrs N

[piglette in reply to Hidden]

Mine used to start with a fizzy feeling around my nose and it just spread, it was rather like turning into a werewolf except I had water rather than fur! Just horrible.

[PMRpro Ambassador in reply to piglette]

Mine felt as if I'd been punched in the solar plexus - and then I would glow all over. Then the sweat trickled down my spine...

Isn't it fun...

[jevuki in reply to PMRpro]

I live in the shower

LOL

[PMRpro Ambassador in reply to jevuki]

I just pretended it was high summer...

[piglette in reply to PMRpro]

I had forgotten about the sweat down the spine bit. Memories!

[Hidden in reply to piglette]

And, the GP just rolled his eyes 🙄 one of these days! 😤

I like to think l'm intelligent so l expect him to listen to what l have to say, not only out of interest but he might learn something! 👨🏼‍⚕️

My middle Rheumatologist always listened, he was well past Retirement (covering Maternity Leave) but l felt he wanted to know, he wanted to find out why? l had a flare just before l saw him in Clinic once & he asked so many questions, he was convinced that this the only way they'd 'discover' a cause or a reason for PMR!

[PMRpro Ambassador in reply to Hidden]

What a sensible chap! It really is time they listened to those of us on the forums who have heard most of the stories...

[piglette in reply to Hidden]

Such rheumies seem to be few and far between sadly.

[PMRpro Ambassador in reply to jevuki]

Well he's wrong - pred IS seen as a cause of breathlessness as reported in a study from the Netherlands:

njmonline.nl/getpdf.php?id=...

Have you been checked for any cardiac arrythmia problems? The autoimmune disorder which underlies PMR/GCA can damage the electrical system in the heart and cause heart rate problems - which cause both breathless and sweats.

[jevuki in reply to PMRpro]

Thanks I will call the cardiologist

[christine2715]

Yes, sometimes I gasp, like a hiccup. I used to get breathless also but that seems better now

[nymima01 in reply to christine2715]

I believe it's called "air hunger". I have it too.

[Hidden]

I have this weird thing that happens... I am almost asleep and I suddenly gasp and immediately take a huge breath....

Doing any activity my hair at the back of my head from half way down starts to drip profusely.. It's so embarrassing..

If I walk further than a football field I get short of breath. Recently I felt it was my weight gain but remember it started with the 50mg of prednisone.

Both have gotten better on lower doses 16 me right now but with activities it is there.

Seeing a pulmonary doc at end of month...

Has anyone done this goofy thing.... I lie down to go to sleep and I get this bubble up my throat and pops thru my lips it feels weird. What I read was too much air on cpap which I don't have as yet...

[HeronNS in reply to Hidden]

Lin-calif, your first symptom sounds like sleep apnea. I have it happen occasionally if I'm in an odd position, say nodding off in front of the tv.... Probably worth investigating if it happens often as I think it can lead to more serious problems, and is easily treatable.

[klairv0yant in reply to Hidden]

I was searching for symptoms of breathing nature, in which I saw this comment. I have, since PMR , HAD THE GASP/chocking type breath hit me. It's quite scary to say the least.

[knit1purl2 in reply to Hidden]

I had to laugh about the bubble in your throat. If I lie on my back, as I am falling asleep, I call it a "puff" that comes out.

But on higher doses, when lying down, I would have a short gasp of breath.

[Hidden]

Hi jevuki

Yes, when I was on higher dose of Prednisolone l was at 18mg for a while & it affected my breathing & as for going up a slope, you'd think I'd run a marathon, I sleep on two pillows, l can't lay flat.

My GP ordered Chest X-ray, ECG & Bloods as he thought l had Heart Failure! 😱 Was OK though but he sent me off to another Rheumatologist & she put me on Methotrexate as a Steroid Sparer to get the dose down, which l have now at 6.5mg but thinking may have to go back to 7mg

I still get out of breath on a slope or stairs but BP is more stable now too! All definetly caused by the Prednisolone, our double edged friend!

Mrs N

[Hidden in reply to Hidden]

Before I was diagnosed with PMR I got very short of breath, so bad I was off work because of it, nothing could be found after many tests on my heart and lungs, after going on a high dose of prednisone it went a lot better, It came back as the dose was lowered , I am now on 6mg and I get periods of breathlessness,

I,ve asked if it could be connected to PMR but I,m told no by the hospital, I have been told prednisone could be keeping it under control to an extent , but they can,t pin down the cause.

Cheers

Nev

[Hidden in reply to Hidden]

Hi Hidden

Yes & they give Prednisone to Asthmatics to help them breathe when they can't control their Asthma with inhaled steroids, as we know they work for inflammation but when it gets too high or too low we run into issues.

Hope your breathlessness improves soon.

Mrs N

[jevuki]

Thank you all I am calling the cardiologist today this is beginning to make me nervous

[Janll in reply to jevuki]

Since having PMR and recently lowering the dose, my sweating was pretty constant. I've notice since having to up my dose to 8.5 9, my sweating hasn't happened hardly at all. Regarding breathing problems. The PMR is affecting my rib cage and I can't seem to expand my lungs like I used to. I cough more and have hiccups more, I also get light headed. I have also become anemic which is affecting my breathing, says my Rheumatologist. So, all seems normal. I absolutely HATE PMR and STEROIDS. I'm sure I'm not alone. I hope you don't get over stressed jevuki, with all that your symptoms might be. Its good to check things out. Anxiety can make all things appear worse. Take care.

Jan

[jevuki in reply to Janll]

I see the cardiologist tomorrow and will keep you all posted

[Hidden in reply to jevuki]

try not to worry too much , I,ve had umpteen tests on my heart and lungs and nothing serious has been found, in fact since first being ill I have found that I have a whole lot of things NOT wrong with me .

cheers

Nev

[jevuki in reply to Hidden]

I will keep that in mind thanks!

[knit1purl2]

Mentioning the sweating, at higher doses, the sweat would drip off my eyebrows and down the sides of my temples.

[jevuki]

Well its been a whirlwind since I last posted, they found that my aorta has an anyuerism had a ultrasound of that, may have to have hip replacement, going to ortho for spine issue pinched nerve now have drop foot it just keeps on keeping on. I will take one thing at a time the most serious first. Still have shortness of breath but am chalking up to prednisone down to 14mg doing Dead slow wean.

Stay well everyone!

[PMRpro Ambassador in reply to jevuki]

Nothing like doing things by halves - and that is NOTHING like halves!

How big is your aneurysm? Is this watchful waiting or is it do something time?

All the best

[jevuki]

Hi PMRPRO not sure had the test Friday waiting to hear from heart doctor, my husband says if they did not put me in hospital right away it must be small enough for the watch and wait category....