I have become so breathless can’t even get dressed in one try?
Heart specialist says it’s not my heart.
Lung specialist says it’s not my lungs.
Any input from others out there?
Had a stroke in one eye four weeks ago but I guess I can’t plane PMR for that!
I went off prednisone and within two days PMR hit with a vengeance.
I say PMR rheumatologist says it’s not PMR as I have no elevated inflammatory markers in blood tests. But I was in agony everywhere until I was finally given prednisone.
Any comments would be appreciated
Thanks
It sure destroys one’s life in an instant
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Yogikay
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would have thought that if you can’t even get dressed in one go due to breathlessness, someone needs to have a bit of a think. Has anyone thought about large blood vessel inflammation? Are you on Pred? What investigations did they perform to suggest no heart or lung problems? Did it come on suddenly or slowly creep in?
I said earlier today the lack of curiousity really does bother me sometimes! If I was that breathless I like to think I'd be admitted until they knew what it was and found an answer.
I always thought it showed lumen size and shape so if the inflammation wasn’t sufficient to cause narrowing in the vessels looked at it wouldn’t help find LVV, especially if just the heart is looked at.
If it is asthma and that much salbutamol’s is needed frequently, a longer acting one is needed. But as you say, the lack of interest is not ideal.
My husband's chest x-ray when he had some symptoms showed nothing. He said he felt very short of breath and it sometimes hurt to breathe. He persisted and he had a CT scan (I think) which did show infection in the lung which was treated with antibiotics (and me making sure he got a good probiotic between doses because he was on two antibiotics, one of them general the other quite strong). A followup a few weeks later showed a nodule of some sort but as his symptoms were eased they waited and a further scan some time later showed lungs were clear. He does, however, continue to need a puffer from time to time, especially when walking. He had had covid some time earlier.
The reason he asked for further imaging was because our sister-in-law had had covid somewhat earlier and subsequently also had a clear chest x-ray but additional imaging showed that she had some clots in her lungs. This was a while ago, and she is doing fairly well, but as a cancer patient not great. She is, however, able to go on ice fishing expeditions and has been travelling quite a bit with her husband usually by car.
This is by way of me suggesting you ask for more intensive investigation. These are two people in my close family who separately, one in BC the other in NS, had lung problems but apparently clear x-rays and who were both found to have significant issues through the scans.
My concern would be Large Vessel Vasculitis/ GCA. Are you being investigate for this? Mine was diagnosed by a vascular ultrasound scan, followed by an MRI. It is closely related to PMR.
My breathlessness, initially diagnosed as chest infection, led to 7.5 cm aneurism. Not diagnosed with GCA till 18 months' later. Aneurism spotted via ultrasound, resulting in emergency hospital admission. Pursue any breathlessness!
Same story for me. My large-vessel vasculitis was discovered through a PET scan and had by that time caused damage to my aorta. And I too do get breathless in a way I did not before. As random901 wrote, please pursue your breathlessness,
So hard to know though I would think that the breathing is more "the result of" than "the reason why". But again, one can only guess on the basis of one's own experience. Having just had an ECG done, I am off to a cardiologist tomorrow to hear how he sees my situation and if there is anything I should be mindful of in the light of what they found from the PET scan I had about 3 weeks ago, namely 2 aortic tears (b-dissection). I was told that a b-dissection (in the lower part of the aorta) is not as critical as an a-dissection (in the upper part) and got a message that they had scheduled me for a follow-up PET in November 2024, but I asked to see a cardiologist in the meantime. Will post any advice I am given. (I realize that aneurism and aortic tear are - probably - two different things, but they are the result of the undiscovered vasculitis.)
Just looked up my medical reports. It was an "echocardiogram" which showed up the thoracic aneurism and I had to have the aorta reinforced via lengthy open-heart surgery. I am STILL convinced it was caused by undiagnosed GCA although both cardio and rheum teams don't seem to see any connection.
I am really sorry to hear about all you have had to go through.
Regarding my newly found condition (aortic tears), I saw a cardiologist yesterday who was very helpful. Said that in her opinion my present condition came about due to undiscovered, ongoing GCA. I asked her what I should be observant of regarding behaviour with an aortic tear. She said that the most important thing was to ensure that my blood pressure did not exceed 130 over 80 at all times. This will be even more important to keep an eye on when I start on Actemra in a few days time with the aim of reducing my intake of Prednisolone more quickly because the main side effect of Actemra is HBP. So that will be fun. The other thing to be careful of is lifting heavier things. She said that it was important not to do that. Otherwise, I can exercise as I would normally do. I do feel very blessed to have two super doctors (rheumatologist and cardiologist) taking care of me.
I'm on medication for BP & have occasional problems with that upper figure. And yes, lifting anything heavy, or even overstretching upwards, is a no-no. Interesting that your cardiologist connected undiscovered GCA to your heart incident. I remain convinced there is a connection in my case, too. All the best for Christmas and the New Year - everyone! 🎅
Have you spoken to the asthma nurse at your practice? Putting the other stuff to one side for a moment, let's assume that it is asthma for a moment, then you are using way too much salbutamol. I'm not suggesting that the salbutamol dose is harmful, just that the frequency with which you need to use it shouts loud and clear to me that your asthma is poorly controlled. It suggests that you also need an inhaled corticosteroid.
The way that asthma is managed nowadays is different to how it used to be, the asthma is controlled with inhaled corticosteroids and the salbutamol is used as a rescue. This is to make sure that your lungs are better protected. Even if you are on pred, if your asthma is this bad, you will quite likely still need an inhaled corticosteroid. Don't worry about using it at the same time as the pred, it is not the same drug and the dose is many times lower, but is more effective because it is acting locally. I'm not a doctor, so I am not suggesting that this is the issue for you, but my recommendation would be to see the asthma nurse, explain the other issues and say that it has been suggested that your asthma may not be adequately controlled and you would like advice on this.
Something else to consider is whether it could be an allergy. Is there something in your environment that may be triggering the asthma? A new pet, build up of household dust, a smoky fireplace, spraying on fields, etc, the usual stuff. Also, had you recently had covid when all this kicked off? Incidentally, my asthma got a lot worse when I first started pred for a while. I have no idea if it was linked as it resolved, so may be a coincidence.
Anyway, the above is just a suggestion to explore. Not being able to get dressed is pretty severe if it is asthma. I have never been that bad, except when I have been having an acute exacerbation. It still bothers me that your breathing is this bad and investigation seems to have been halted, especially as it can be a sign of other underlying illness, some of which seems to have been considered already. I would be inclined to go back to the doctor and say that you aren't satisfied or ask to see a different GP. You could ask the same question. Do they consider this to be due to your asthma, and if so, is it being adequately controlled with the salbutamol inhaler alone?
EDIT: I might have misread your post, the above info was based on me thinking that you are taking the salbutamol four times a day. However, I'm going to leave this post, as it may still be relevant info.
I have had the same issue for eight years. As soon as I exert myself, the breathlessness comes on. None of my doctor seems to be interested in finding what the cause is. Same as you it’s not my heart, it’s not my lungs. One doctor just says it’s the PMR, rheumatologist says it’s not, and that’s where I’ve been left. It’s been extremely hard to tolerate.
I'm in the same boat: morning stiffness, bilateral shoulders and hips, excellent response to prednisolone. Can't get a diagnosis or treatment because of normal blood tests and scans, and the fact it came on atypically.
I also get breathless when I'm lightly active. I sweat buckets, too. Had a full, private cardiology check (ECG on a walking treadmill and ultrasound scans) which was also clear.
My eye/headache symptoms have not reached the blurred/double/stroke stage, yet. I take 1200mg of dispersible aspirin (with a meal, if possible) when they get too bad.
I've lived with atopic immune-system problems (for which I've taken lots of daily medications) all my life, yet I'm told I do not have any inflammatory disease.
Sorry to hear...I spent Thanksgiving (States) 34 cm DVT and 2 PEs....out of the blue too..? 1 leg 2cm larger circumference..More repeat testing blood work and in May to determine if antiphospholipid antibody syndrome. Unusual but probably not..per MD.(hemayologist).currently on anticoagulant pending fu and testing. PE visualized on CT, DVT: US vascular study.
Just my current experience. Hang in there, pursue your health. BTW lower leg+ 2cm still present w compression stockinged. Most likely permanent is what I was informed..
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Normal inflammation blood markers- PMR symptoms
Some positive news!
Freaking out, sort of 
Post PMR 
rheumatologist locum visit for prednisone refill
