Can pmr effect lungs & breathing

[Ronzy]

I am terribly out of breath, no cough or muecus

[winfong]

I've certainly had it before, esp. on exertion. It's also one of the constitutional sypmtoms, which usually appear at the beginning of the disease (along with fever, coughing, fatigue ...).

[123-go]

Wow! The doctor at the Quick Care Center was certainly on the ball and here you are to tell the story. 👏👏👏

[123-go]

The breathlessness may be more related to your Gilbert Syndrome than PMR but I'm no doctor. Are you looking after yourself, Ronzy? Eating regular meals? Drinking plenty of water? Keeping alcohol to the minimum?

[Bennijax]

Interesting, maybe my PMR was already developing a good 18 months before I was diagnosed with it. I went to the GP with noticible shortness of breath. He had me go through all the various tests, exercise tolerance testing, uphill testing, ECG, PFT and was considered normal. For over nearly a year I was going back and forth to the local hospital for testing. I felt I was wasting my GP's allowance for me or judged to be malingering. But I knew something was wrong. I still ahave this and make sure I walk on the flat, yet climbing my stairs regularly at home has been good for me. I treat that like exercise and can judge how well I am by how far I can climb in usual time.

[sewingdays]

Hi Ronzy. So sorry to hear you are getting out of breath from the slightest exertion. I was diagnosed with PMR in February 2021 & the breathlessness started around August. It wasn’t much at first but then got worse. I had blood test to check my heart & a chest x ray & all was ok. I went through a period of not wanting to go out apart from driving to work as I felt I may not have been able to walk home. I still have it & have learnt to plan shopping etc & start back home when I feel I’m flagging. It isn’t easy living with PMR but as everyone here says listen to your body & rest when you need to. Good luck x

[Maisie1958]

Morning Ronzy, I was certainly breathless before PMR diagnosis, but you are not long recovered from Covid? I remember a number of (young and healthy) friends saying it took them several months before they got back to full “lung capacity” after infection. I do think you should see a doctor soon -so many things could be causing your breathlessness which sounds quite incapacitating. Hope you feel better soon.

[Ronzy in reply to Maisie1958]

👍👍thanks and you 🍀🍀🍀🍀🍀🍀🍀

[Ronzy]

Wondering if I would be better on more prednisolon

[Pixix in reply to Ronzy]

I’ve been breathless for past 4 weeks, Ronzy. I’ve also had a number of other medical issues (some PMR related, some not). Had a half hour phone consult with my doctor last week, he’s doubled my pred, but not because of the breathlessness. It hasn’t improved the breathing at all. Just to give you my personal experience. But you’ve recently had Covid, couldn’t it be that? I would never double my pred without doctor’s advice, I really really want to give it up, or at least go down, not up!! My doctor has asked me to go in to the surgery next week, & has cleared an hour space in his appointments at end of day to ‘deal with me’…my words, not his!! Do take quick action & seek medical help, please!

[PMRpro Ambassador]

Then PLEASE speak to your doctor - asap. If it is very bad, call 999 and say it is difficulty breathing, There are many causes, some of them serious and you can't know which it is. Don't self-medicate until you have been assessed by a healthcare professional.

The last time someone posted something similar they ended up collapsing and someone else did what we had all said they should do: call the emergency services, It turned out to be a pulmonary embolism - and they can make you very very sick, even kill. Please get that ruled out. NOW!

[Ronzy in reply to PMRpro]

Thanks for that 🌹im going for exray tomorrow 😊🍀🍀🍀🍀🍀🍀

[PMRpro Ambassador in reply to Ronzy]

Good - and let us know how you get on!

[Ronzy in reply to PMRpro]

Will do thanks 🌹

[Ronzy in reply to PMRpro]

Hi I’ve not got any results from X-ray yet but feeling tuns better today, as I have gone back up to 20mg. Doctor had dropped me to 15 after 4weeks. 🤷

[PMRpro Ambassador in reply to Ronzy]

Too big a drop - but it does also suggest there was some inflammation involved in the breathlessness. Next time, not more than 2.5mg reduction!

[Ronzy in reply to PMRpro]

Thanks I definitely won’t 😤

[Flivoless]

I walk a mile and bit a day, fairly briskly in the morning before Pred, and I have my own exercise routine, PM after Pred at 10am, after which I'm hardly out of breath at all (a little on the one hill) but at other times I can just walk up and down the stairs, not rushing, and be out of breath albeit just briefly. So I wonder if it's a "time" thing dictated by when I take my Pred (currently 9mg). I'll will now experiment walking up and down the stairs at different times and see if there's a difference.

[Purplecrow]

Out of breath was my only Covid symptom. Blood clot in lungs caused by Covid. Need to go to hospital.

[anutycrixp]

I suffered shortness of breath among other symptoms before being diagnosed with P.M.R.The blood test showed I was very aneamic which I,ve never been before.I had a lot of invasive gut screening as medics thought there must be a sinister reason for what amounted to hidden blood loss..all clear.Th e anaemia gradually improved with steroid treatment for P.M.R.Apparantly anaemia can be associated with some chronic illnesses and it is not appropriate to pile iron into you.I,m still mildly breathless but I feel it is to do with being now unfit and er, bit overweight.I,m just not able to be physically active.

[Ronzy in reply to anutycrixp]

Thanks 😊 I mentioned I was wondering about anemic

Doc said I had blood test 2 months ago and

Was fine then 😱

All the best everyone

🍀🍀🍀🍀🍀🍀🍀

[HeronNS in reply to anutycrixp]

The anaema of autoimmune disease is when your haemoglobin is low, but ferritin is normal or high. That's why iron supplements are not advised in that case. It is probably a very good idea to have both checked. I'm lucky that mine was at it turned out that haemoglobin was low but not desperately so, but ferritin was practically non-existent!

[Karenjaninaz]

I’ve had breathing problems well before PMR because I have asthma and some restrictive lung disease from scoliosis. The surgery for scoliosis involved cutting into the chest to help reduce the curve but the Chest deformity is still there. I also have environmental triggers to the asthma like: mold tree, pollen and dust mites. I’ve had reactions to medication like Forteo and went to the hospital short of breath. Every time I go to the hospital they rule out pulmonary embolism with a chest CT with contrast and EKGs- all always normal.. I believe the long-term steroids in my case 6 years, the inactivity because of Covid, combined with my physical shape strongly contributes to my difficulty breathing. I actually read an article about heavy duty steroids for an asthma attack weakening the chest muscles that you need for breathing. I was on 5mgm prednisone in Oct. when I developed, worse than usual, shortness of breath and went to hospital. They gave me 40mgm of prednisone decreasing by 10 mgm over 4 weeks down to 14, which was the lowest I could tolerate at the time. So I started ,all over again, tapering. I am waiting for pulmonary rehabilitation. Interestingly, pulmonary rehab stresses increasing muscular strength which, in turn, helps their oxygen utilization. Unfortunate, I must wait some months for a slot. Very discouraging, to say the least. Doing what I can to achieve some improvements.

[123-go]

All the theory in the world won't compensate for experience 😏.

[winfong]

And in the other corner ... I've signed AMAs (against medical advice) several times.

One was when I had mild anaphylaxis and was at a doc-in-the-box a hop, skip, and a jump from the ER (A&E). I figured I could drive the quarter mile myself (and save $2000+ at the same time).

Another was when I had a diverticulitis attack. Had the fire department there as well. When they came, I was in so much pain I simply couldn't move. I was finally able to get to my feet and have my wife drive me 10 minutes to the local hospital. Another $2000+ saved.

And then there was the time I wish I had refused ... I was out hiking in 90-degree (30+-degree Celcius), high-humidity weather and got heat exhaustion. Probably less than a mile to my car, but was literally crawling along the trail. Still wish I could have saved that $2000+.

Ah, the joys of American medical care.

[Iamfedup]

When on high doses is pred I was breathless walking up hills,that stopped along with other pred induced problems at lower doses