Is it my lungs or PMR

[Dydee]

I have gone back in my memory trying to figure out when my issues all began and in what order. I believe my PMR started in early 2019 when preparing for a dog show (possibly sooner and I just blamed it on old age LOL). Muscle weakness and shortness of breath were new to me. Over the next several months my symptoms worsened and typical PMR symptoms set in with severe muscle aches in shoulders, upper arms, hips and thighs. When it became obvious it wasn't just going to heal, I went to the doctor and after 9 months of physical therapy attempts and a few rounds of Prednisone that worked, I found MY OWN diagnosis on the internet and docs agreed. So my shortness of breath seemed to improve with Prednisone along with the other symptoms. After a couple years and tapering to about 7mg of Pred, my shortness of breath became an issue again, to the point my doc sent me for a CT scan and to a heart doc who did a stress test (I failed miserably) and an angiogram. The CT scan showed healthy LOOKING lungs and angiogram showed a heart in great shape for an 80 year old with no blockages. I was diagnosed with COPD (never smoked) anyway and put on strong heart meds that I refused to take. I continued to taper and at around 3mg Pred my breathing improved somewhat. I am now alternating between 1.5 and 2 mg and exertion does make me huff and puff some but not like before.

I was always a very active person, working out, hard walking every day, country dancing, my own remodeling projects, yardwork, etc. PMR brought me to my knees, or maybe I should say my keester as I had no energy or muscle power to do anything but sit for at least 18 months until my diagnosis and meds brought me relief. And that same week I came down with Covid!!! LOL I was told that the Pred probably helped me have a pretty mild case except for my first time having AFIB and a short stay in the hospital.

So, I'm just wondering if PMR can have an affect on the lungs, and if so, is it permanent. I have had no problems tapering once I got below 7mg other than tiredness from lazy adrenals. and PMRpro wisely slowed down my taper to help alleviate that. Just would like to get some stamina back and was hoping to get back to walking one day. Sorry to be so long winded. 🙃

[HeronNS]

I've never heard of PMR affecting the lungs. It's probably a separate issue, although it does seem to respond to pred. Isn't pred used sometimes for people with asthma, for example? And, sad to say, even a "mild" case of covid could lead to longterm issues with any organ, in your case perhaps the lungs? Especially as you'd already been experiencing some shortness of breath. Prednisone being such an effective anti-inflammatory certainly seems to be helpful here, doesn't it, so maybe one benefit of coincidentally being treated for PMR?

[Dydee in reply to HeronNS]

Except that the shortness of breath started roughly 18 months before Covid. I have a high threshold for pain so I stupidly waited until I as almost immobile to go to the doctor. My diagnosis and starting on Prednisone came 9 days before I came down with Covid. What a month that was.

[HeronNS in reply to Dydee]

Yes, I understand that, just meant to suggest that your pre-existing condition might have been exacerbated by a virus, it being an established weak place in your defences.

I must say this is a fascinating thread and, as PMRpro said, "food for thought."

[Dydee in reply to HeronNS]

I don't know but the shortness of breath was accompanied by muscle weakness in my arms and thighs with no other symptoms. All got a lot worse several months later. But the shortness of breath really got bad a couple years into being on Prednisone and improved some when I tapered to 3 mg. I wish I could find that study I mentioned. Also I'm wondering, PMR affects muscles and blood vessels in hips and thighs, and shoulders and upper arms. Since the lungs are a muscle and loaded with blood vessels and in the upper body like the shoulders, why might not PMR affect them? Just wondering.

[HeronNS in reply to Dydee]

I never really thought about lungs before. Found this abstract of an article which talks about the muscle cells of the lungs. pubmed.ncbi.nlm.nih.gov/974...

The more we know about our body the more amazing it appears! And to think if we aren't taken out by accident or pathogen we keep on ticking for decades. Wow, just wow!

[PMRpro Ambassador]

It is something that hasn't been studied a great deal but is said to be rare in PMR -although it is associated with undifferentiated connective tissue disease and some defined arthritides such as RA.

This paper describes a series of patients with a PMR diagnosis who also demonstrated ILD, interstitial lung disease.

ncbi.nlm.nih.gov/pmc/articl...

It may be worth talking to your doctors though you were investigated and I would have expected that to show it up if it were there. It is often treated with pred - which might account for the improvement on higher doses of pred.

However, do bear in mind now that you are 5 years older, are bound to have lost some condition due to PMR and pred - none of which is unrelated!

[Blossom20 in reply to PMRpro]

Interesting paper......15 out of 17 Pmr patients had the lung disease (if I remember correctly). That's a huge number!I've had a bad cough for ages and am now on 1mg twice a week. Don't know if there's a connection...I.e. with the reduction in pred it has surfaced..

[PMRpro Ambassador in reply to Blossom20]

Certainly food for thought.

[HeronNS in reply to Blossom20]

That was 15 out of the 17 who had been referred. I wonder what the actual incidence is among the general PMR population, and also what other conditions could arise because of the association with connective tissue disease.

[Dydee in reply to HeronNS]

That was my thought reading the report. I doubt if many doctors refer PMR patients to Pulmonologists, especially since so many docs don't even recognize PMR in a patient or the correct way to treat it once it is diagnosed. I read a study, I believe it was done in Denmark, with a large number of PMR patients and they discovered that the disease actually puts little nicks in the blood vessels and ligaments too. (That is in my words) No wonder it hurts so much. Would be interesting to know how many folks experienced breathing issues when they came down with PMR.

[PMRpro Ambassador in reply to Dydee]

Do you have a title or reference for that?????

I think a lot of people do end up with chesty problems although the rate of serious causes is much lower. But it is there and ignored I suspect - rheumies just don't want PMR to turn out to be so serious.

It will be interesting to see how this new work about the amount the weight loss drugs reduce cardiac disease rates is received in the UK - since NICE turned them down as not cost-effective a couple of years ago. Confirming to some extent at least for me that the NICE "experts" live on another planet - as in the Actemra decision for GCA and refusal to allow it for PMR.

[Dydee in reply to PMRpro]

So sorry but I've been unable to find it again. Will keep trying and check my other computer in case I saved it in my health file.

[Dydee in reply to PMRpro]

By the way, I got so wrapped up in the read I forgot to go back and thank you. I really appreciate the information. Certainly food for thought.

[singingloud]

I’ve had PMR for five years now. I’ve never been successful at getting to 7mg. Recently I was having issues with night sweats and morning sweats, so my PA ordered blood test, X-ray of my lungs which showed and enlarged heart and probably interstitial lung issues, saw a cardiologist, who ordered another echocardiogram and I had a CTscan.

The CT scan shows possible ILD or mild small airway disease. So now I must wait till mid July to see a pulmonologist.

Are you having symptoms of ILD? Maybe you should see if you can get an updated CT scan to compare with your past CT?

[Dydee in reply to singingloud]

Actually my breathing improved some. I used to really have a problem exhaling, even just getting ready for bed. I no longer have that problem. The pulmonologist watch the CT scan over and over, and over again and said he couldn't see anything wrong with my lungs.

[Dydee in reply to singingloud]

It's so hard to imagine that as we age other issues with our health are probably happening separate from PMR. It's often hard to figure out what is and what isn't related to other things. Since PMR is a disease of the blood vessels and muscles I figured the lungs, being a muscle, may be a target. Waiting to see a specialist is so frustrating. Good luck.

[AtopicGuy]

Because of its close association with GCA, PMR is believed to be rooted in vasculitis: inflammation of blood vessels that reduces the flow of oxygen and nutrients to the muscles. It follows that poor lung function (eg. COPD) might further restrict the supply of oxygen and make the PMR symptoms worse, especially during and after exercise.

Edit: Let's also not forget that the blood vessels also take away carbon dioxide and other waste products from muscle cells. Inflammation of the blood vessels will also interfere with this equally important, but often forgotten, process.

[SRIXON]

Enjoyed your story as I can relate to how yoy feel with pain and fatigue. Hope your feeling better. Carl x

[Abcd123455]

I found my asthma was great on 5mg or more of prednisone, now on 1mg and really can’t skip my preventative inhalers. It took about 3 months to stop coughing after my last Covid infection too.

[Dydee in reply to Abcd123455]

It's so funny how differently Covid affects different people. My bad cough only lasted about 24 hours on the third day, then only occasionally after. But it gave me AFIB on day 12 and a short stint in the hospital to stabilize it. Once my taste and smell came back my only residual affect was a drippy nose. LOL And I don't have allergies, or didn't anyway.