First post , is it just me or ...

Is it just me or does anyone else get short of breath ? I went off work late last year because I became short of breath , this was the start of my illness, during the next two months I had many tests on my heart and lungs which showed that they are fine, during this two months I started the symptoms of what I now know to be PMR , it was my GP who realised what was going on, the thing that has him puzzled is the shortness of breath , he hadn't heard of that as a symptom of PMR , the Prednisolone stopped it within two days and it came back when I went down to 10mg per day ( I,m back on 12mg now ) . Has anyone else had this problem ?

[Rose54]

Hi

Yes I do

it can be a side effect of preds

I am not as bad as I was but going up a small incline is like climbing Everest

I am like you on 12 a day after getting down to 10 had to increase

Started this journey Aug 15

Best Wishes

Rose

[valrene in reply to Rose54]

Hi Rose yes that's what I have, thought it could be down to all the weight I have gained around my middle, have had heart, lung, scan, respitory tests every thing has come back fine, the main time time I'm breathless is when I'm tired and I go upstairs and have to sit on bed to get my breath back, or on exertion, Rhuematologist has still no answer for it, sorry you have this problem but glad I'm not alone with it. Val

[Rose54 in reply to valrene]

Stairs do me in I get half way and I feel about a hundred years old

Escalators and lifts when shopping.

Sitting is fine. best time for me is bed nothing hurts and breathing is fine.

Enough joking best thing I have found is listen to your body, I work full time and know when I have had enough. I avoid hills and try not to walk to far I don't drive so use the bus .

Your defiantly are not alone

Rose

[lesley2015]

Hi Nevb

Yes I did, I have horses and was finding I was getting puffed doing the field turnout/get in, having done so for over 20 years without puffing I initially put it down to getting old (early 50's). However, aches continued and PMR/GCA eventually diagnosed. However, my puffing got worse on the steroids and I am still puffing if I try and walk up hills etc. or any distance etc. (on 14mgs)

Best wishes

[Hidden in reply to lesley2015]

Thanks Rose and Lesley for your replies , much appreciated

[Nap1]

Yes in the beginning of GCA I had a dry cough and was short of breadth.

[PMRpro Ambassador]

I have recently during a flare. I suspect it is GCA affecting chest arteries but which is presenting then just with PMR symptoms rather than what most GPs perceive to be GCA: headache and visual symptoms.

If it were the pred the symptoms would be WORSE at higher doses, not better.

[christine2715]

I am very breathless and think its part of the illness. I have GCA - the rheum told me it will take two or three months to go away.

[Hidden]

Yes I have breathlessness ,my doctors say my chest is clear , I know that it,s my windpipe that is congested I can feel it .I cannot breathe in the morning and my eyes are very tender and messy and I think chest and windpipe are really congested . It takes about an hour after meds for my face to stop the crackling cellophane noises .Unfortunately I cannot get to the doctors while this is happening so treat the patient as though they are imagining it is the easiest way I suppose . I have warnings of COPD so maybe this is another issue .Not sure . Can't walk far without running out of breath it's very frustrating .on the bright side I have managed to give up full time long hours and get a part time job .Money bit of an issue but I have at last admitted defeat and bitten the bullet and I am so glad I did .

[Chihuahua1 in reply to Hidden]

PJRW>

You could try asking the doctor to test you for exertion reactions. Running on the spot, climbing stairs etc and se if you can bring on the symptoms. It then opens the door to you being able to say that you are like this when you first wake up and give him the symptoms and the time frame as to how long it takes for it to settle down.

[Hidden in reply to Chihuahua1]

Oh good advice Thanks ,will try that .

[Hidden]

The breathlessness is not happening while I am on 12mg, it started before I was diagnosed and greatly improved when I went on prednisolone, when I dropped to 10mg it started to come back after walking upstairs, I,m finding out that this condition gives quite a few different problems for different people.

Many thanks to those who have replied

[lesley2015 in reply to Hidden]

Hi Nevb

I would agree, we each have similarities but also have things that vary with the individual. I think for me, as I have got used to the aches and pains i have learnt to listen to my body, it just throws me when something new pops up! GP said I had tendonitis, looking on here sounded likely, my consultant said no, its a trapped nerve in my neck. The medics are still debating my swollen eyes but i am washing and soaking them as per kates book and some days are better than others - some days are so blurry i cannot see to read or drive etc.

My consultant said my breathlessness may be caused by pred weakening the muscles which would include my diaphragm, which would cause me puffing and breathlessness - but still to do this to strengthen it. (he also mentioned pelvic floor muscles too - Joy)

So perhaps get further advice?

Best wishes

[Megams in reply to lesley2015]

Hi Lesley - please tell me what so of exercises u do for the diaphragm, keen to know. I tear tendons so easily so am extra careful.

Before bed at night I lie on my Obie roller (bought from Physiotherapist some years ago) & carefully get into neutral spine position then gently raise legs in air as if cycling. This helps my pelvic floor muscles + other areas as well.

Blessings

[Hidden in reply to lesley2015]

Oh that's funny My Rheumy has just decided that the tendonitis is now trapped nerve from neck or shoulder strain .She said the shoulder muscle is solid ,her words . Be careful it dosn't go to frozen shoulder was her advice . How ? I have a new p/t job ,It's ok for them to say it's not good for you we need to pay our bills and I dont want to sit at home whining getting on peoples nerves including my own haha . I am very limited in what I can do so I do what I can .

The breathlessness ? my chest is clear although I have copd .Odd . I cannot breathe deeply ,one suggestion that was given to me may help was to clear my lungs windpipe ect by using mentholated inhalant .The type you put in hot water an throw a towel over your head .You can get it from the chemist it's not a prescription one . I do it at night before bed . I think it helps .You could try it ,nothing to loose eh .

[Chihuahua1 in reply to Hidden]

Nevb

If your breathlessness eases with the use of prednisolone it could possibly be related to Asthma. Have a word with your GP about it.

Nake sure you let him know that the prednisolone makes breathing easier rather than the other way around

[Hidden in reply to Chihuahua1]

When I first became ill I was given an inhaler which didn't make a bit of difference, all the tests I had show that I don't have a heart or lung problem, two days after taking Prednisolone I was fine, when I went down to 10mg the problem came back, I,m on 12mg at the moment and I have walked half a mile this morning with no shortness of breath.

thanks for your reply

[Megams]

Yes I have had moments of being short of breath & increased noticeably late last year, definitely this year when trying to taper my steroids for PMR.

Some days OK, other days just couldn't quite breathe from the depth of my lungs, reasoned with myself that it was probably a result of my slightly swollen steroid tum which I am so careful in controlling diet + making sure of exercise etc.

Heart didn't take too well to this breathlessness over lengthy period & had small heart attack recently. Will know outcome of state of heart 25 May as had MRI today.

Also saw Respiratory physician this week who suggests that as my childhood asthma went untreated well into my teenage years (no in halers then) the tapering of steroids has increased/aggravated inflammation lower lobes of my lungs - I didn't have a wheeze that I was aware of, my lung x-rays appear normal. No phlegm - cough only when short of breath. Having had this history I breath from upper chest without realization - not good.

When completing a spirometer?? test my exhaled breath fell short each time - now prx'd QVAR, asthma preventative inhaler which hopefully will have a two fold effect - to allow me to continue to taper (in time) & to enable me to breathe better allowing my body, especially heart to function as it hopefully should.

Diagnosed with obstructive sleep apnoea pre Xmas so it is suggested by Respiratory Professor that we take a closer look @ this in the lab overnight some stage when other issues sorted.

Good luck with your breathing issues - very daunting & troubling when we don't know why? Hope u get some answers soon.

Blessings to you all

[HeronNS]

Why is this? They use prednisone or something similar in some asthma puffers don't they? So you'd think if anything that we'd have better breathing, rather than breathlessness!

[Megams in reply to HeronNS]

Hi Heron

Obviously my underlying issue presenting since tapering my hydrocortisone (was on low dose to begin with as sensitive to all drugs) appears to be this change in airway lower lobe of lung/s which steroid must have dealt to over & above my PMR diagnosis without me knowing it.

Prior to this never been on an asthma preventative but have carried a Ventolin inhaler just in case as developed sensitivities to foods as I have aged. This inhaler does not contain any steroid but the preventative inhaler does - this is what Respiratory Spec now wants me to use & monitor what happens???