PMRGCAuk
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Involuntary sobbing breath

Relatively recently I have developed an odd symptom of a sudden involuntary intake of air like a sob. I was wondering if it is a side effect of any of the meds. It just happens randomly. People think I am gasping because something has happened but nothing has. Not too bothered unless it indicates a problem. PMR for nearly two years Pred 7mgs.

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Yes, I've had that experience, too, though it seems to be easing off now. I'm on 7mg and I think it was worst when I was around 10. Strange feeling, almost as though I was struggling to breathe momentarily.

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I do that too and look around as if it’s some one else doing it x

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Hi Jane

I remember having the same disconcerting (!) phenomenon 3 years ago when recovering from Pneumonia and simultaneous with the onset of PMR. I've a vague (I stress vague) memory that it might be something to do an involuntary response in the Vagus nerve - the parasympathetic nervous system which apparently controls all sorts of complicated stuff in the respiratory and digestive systems.

Mine was like having very loud Hiccups - but it disappeared on its own after a couple of weeks.

'Vague, Vagus...' Oops, sorry, an involuntary pun about an involuntary reaction - ha ha! :-D

MB :-)

PMR 3 years, now at 2mgpd Preds - and aiming for a soft landing ;-)

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When I was at 13 to 15mg gasping and breathing issues. However I used to get that gasping when I spent time bending...for example putting bandage on dogs foot. Like my diaphragm wAs objecting to being squashed up (bending and picking beautiful children up?).

I had/Have anxiety issues that used to make me take occasional almost backwards hiccough breath without the hic or cough.

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Glad you posted this as I have had this and was thinking it was just me !

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I've been experiencing that too, no kidding Jane! I've also had shortness of breath (dyspnea) not related to over exersion.. More of a positional thing. I also wake up choking occasionally.

Today I had a Doppler on my carotids and temporal arteries.. itvwas done off the books STS, the doctor spoke only to my husband who was looking at the screen (which made me furiuos but I contained myself😇).. It seems hubby still knows his vascular anatomy despiste other cognitive deficits.. . anyway, he found no infammation halos so dont have GCA in my temporal arteries and I can sleep, assured that I won't wake up blind.

I also had a difference of 30 points in numerous readings over a couple of days and then it was normal again.

I know that you had some of the same cardiac symptoms too, and that an aotra stenosis was ruled out. My rheumi is trying to rule out aortitis or LVV.. I guess now they are saying that LVV and even Takayasu are all phenocopies of the same disease.

Im wondering Jane, whether ruling out stenosis of the aorta has you covered for GCA?

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Sorry.. I omitted that the readings that had a 30 point difference were of my bp

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On the same arm or between arms?

You have seen this have you? (Can't remember who I have mentioned it to specifically now)

academic.oup.com/rheumatolo...

They are all phenotypes - it's taken them long enough to think about it!!

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Between arms.. But it only happened for about 48 hours and now I take my bp everyday on both arms and there is always a difference but less than 10 points

I have claudicacion of both upper and lower extremities, too.. The rheumatologists that have seem me always question me about my name and surname, both Japanese, ( in Spain, married women keep their maiden names,).. Iam only 1/4 Japanese.. 19% actually, according to my DNA test I did on Ancestry. I suppose though, that that makes me more prone to get Takayasu's, ...but my age makes it more likely I have gca.. It has a better prognosis, so I'll be keeping my fingers crossed its not Takayasu's!

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There is not actually any real connection between Takayashu's and ethnicity - it occurs in all, not just Asian.

clevelandclinicmeded.com/me...

consultqd.clevelandclinic.o...

If they don't look for it - they won't find it. And that applies both for age and ethnicity considerations.

ncbi.nlm.nih.gov/pubmed/271...

ncbi.nlm.nih.gov/pubmed/195...

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Thank you for those

You know how it is... they arent up to date.. Or maybe they are just curious to know how a Caucasian looking woman can have a Japanese name.

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I had the same difference between two arms - I had a scan and was told it was stenosis caused by the illness and predisilone

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Maybe you are just becoming aware of it - most people have these odd extra deep breaths.

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Yes I often have these - a bit like a hiccup - I never had them before having GCA

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Hi. I have this gasp thing too. Much worse when bending for anything. Seems to me to be linked to inflammation round my rib cage. When I can feel that, I am more likely to feel short of breath and have these odd big gasps to get a breath. I was thinking it doesnt mean I am actually short of breath, just that the muscles are having to work harder.

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I also have this. Have had it since I was first diagnosed with CNS Vasculitis in 2010, and have been taking Prednisolone. GP or Rheumi doesn't seem worried so neither am I. Good to know I am not alone!

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Yes I have this Jane. Infrequently and doesn't seem to relate to anything I've done.

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I am so glad u posted this as it is axactly the same symptoms I am experiencing I am on 6mg for 3more weeks and then 5mg for a month

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I used to have this on higher doses of pred, but not any more. Exactly your description. Totally random and not related to anything I was doing. Didn't seem to be a problem. (40mg Nov 2016; now on 8 - 7.5mg).

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Yep, I`ve had that on occasions

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I also have experienced this strange breath. It generally happens when I'm in bed. I take a deep breath and it stumbles half way, like a sob and then carries on. I can only assume it's something to do with medication. I'm on 7 mgs and it hasn't happened recently.

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I have experienced the same thing. I think it’s worse when I’m tapering. Sometimes I almost have a feeling of being breathless.

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Thank you everybody for these reassuring responses. I lost WiFi for 2 weeks so I am afraid I have not responded to many communications that I wanted too and ought to have. In this day and age a state of the art beachside house with no WiFi! 400 emails lying neglected. I am not an addict though. Oddly liberating. Still giving the odd dramatic sharp intake of breath.

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Glad to see you here again, I've been wondering where you were and hoping it wasn't bad news. Enjoy the sunshine and beachside house :-)

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Back home to poor old Blighty now. I do love home though. Thanks for caring x.

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