Breathless: Hello all, I looking for advice from... - PMRGCAuk

PMRGCAuk
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Breathless

Hello all,

I looking for advice from anyone who is, or has been, very short of breath on exertion. I was doing fine on the dead slow taper and was at 15 mg, but in June I had a bleed caused by cardiac medications. The hospital Doc put me up to 30 mg so I had to start tapering all over again. By September, I was down again to 15mg, I developed shortness of breath when exerting myself at simple things like dishwashing, bed making, etc. I know this is a great excuse to lie on the couch all day, but trying to maintain a life here.

My GP keeps telling me I have steroid myopathy as I have muscle weakness in arms and thighs and must keep the taper going. Now at 12.5 mg on alternate days, the breathlessness is not improving. Lungs are ok after CT scan of arteries, heart (2 stents) ok. I can walk 2-3 blocks despite being short of breath.

Thanks for your advice and best wishes to all.

12 Replies
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I sympathise with this distressing symptom. You are doing right, I am sure, gently building up your stamina. Well done for”trying to have a life here” that couch can be pretty tempting. I have found a Fitbit motivating in the past.

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Thank you Jane, I like your idea about the Fitbit and will look into getting one. Take care.

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Poor darling. I’m in hospital with steroid induced myopathy. In my arms and legs. I have been terrified of it affecting my diaphragm it the specialists tell me to keep tapering and doing physio. Eat good protein too as our muscles badly need it. Please can you do me a big favour and let me know what happens as we need to share knowledge. Xx

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Hi Daisy, Thank you for your support, I will keep in touch. You have a hard time and I hope you will recover your strength soon. Trust in the rehab. I don't know if my diaphragm is affected, I am waiting for specialist appointment. I read about protein and myopathy and have started taking a protein drink used by weightlifters. Too early to tell if it helps but will let you know. xoxo

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Thank you so much coda. I urge you to find a physio NOW to help you recover some strength and function. I wish I'd done so earlier. It's very rare to get it as bad as me they tell me. I think ha I g loads of protein is definitely important. Please stay in touch xxxxxxx

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I had that problem with "just" PMR originally, before pred. It also happens with a flare - but that also makes the atial fibrillation worse, which also makes me breathless during an episode if I am trying to do something. No answers from anyone though.

Mind you - OH has just had bleeding due to his anticoagulant medication which required several days in hospital - and he is breathless walking from one room to another! Is your bleed stopped and how is your haemoglobin level?

WHY did the doctor put your pred up to 30mg?

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Hi Eileen,

Thanks for your reply, always reassuring to have your view. The bleed was in June, a posterior nasal bleed and after 10 days in hospital with what is called a Rhino Rocket up my nose it finally stopped. The pred was increased as a stress dose which seems to be a hospital protocol for complex cases during medical procedures or operations. Because of stents, I was taking Brilinta/Ticagrelor, a platelet aggregation inhibitors and aspirin. After the bleed I was switched to Plavix. See this article for info, I hope your OH is on the mend.

ncbi.nlm.nih.gov/pubmed/239...

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More skeletons crawling out of cupboards eh? I found a report from 2014 saying that some would be far safer if they checked the blood levels and adjusted the dose. But the USP of these new drugs is that they don't need to be monitored - so saying they should be might put the punters off. Think I'd rather not bleed...

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Right, we need advanced medical degrees just to be patients.

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Got it in one!!!!!

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coda123 I too sometimes get exceptionally breatheless on exertion and am having it looked into.

Out of several possibilities, one is acidosis because when I am unwell with this I get slow gasping "Kussmaul" breathing at rest (such as waking up without getting out of bed) and then during the day sudden fast breathing on the slightest exertion.

There can be lots of reasons for acidosis, if it turns out to be the cause of breathlessness. I have a mild kidney problem which may be a factor but you will probably be quite different.

It's worth getting it checked out.

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Thank you Cetus, I will look into acidosis.

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