Shortness of breath may require prompt action

Bones, joints and muscles
1

What I have recently learned may be useful to some PMR victims who experience shortness of breath on exertion.

I am an almost 82 yr male who has maintained a high fitness level until PMR - diagnosed last August but almost certainly affected as early as the previous August. A typical beginning medrol dosage of 16mg/day brought immediate miraculous relief. My aerobic capability returned completely.

As I began to reduce dosage, I noticed in retrospect a reduction in aerobic "fitness" as some stiffness of my back also increased. Because the stiffness increased but was still tolerable I paid inadequate attention to the aerobic change. As I reduced dosage further (last low dosage was 3.5mg/day) there was drastic shortness of breath with little exertion. It was not acceptable.

I did considerable online research and found a small number of medical papers noting an association of interstitial lung disorder with PMR. I increased my medrol to 12mg/day and noticed a change in aerobic capability almost as dramatic as the initial (miraculous) relief of PMR on first starting medrol.

Had I not increased medrol I am firmly convinced that my lungs would have suffered irreversible damage.

I believe that anyone suffering from PMR should pay close attention to aerobic capability as they try to wean from medrol. While lower doses of medrol may lower the risks associated corticosteroids they may endanger the lungs. For those noticing aerobic insufficiency I suggest serious consultation with their physicians. But it may be necessary to make your own decisions. In my case two rheumatologists told me there was no relation of shortness of breath to PMR or medrol.

PS, I walked today at a rate of 12min40sec to the mile with no distress whatsoever. And I have been down to 10.5mg/day for 10 days.

2

Wow, thanks for the heads up.

3

I'm a 55-yr-old cyclist with pmr for twoyears now, and hve definitely noticed the shortness of breath while weaning off of a higher dose of prednisone.

It never occurred to me that this could be a permanent condition or damage the lungs, and as I have found myself under-medicated to a lesser degree at times, my aerobic capacity always seemed to return.

4

Shortness of breath is a well documented side effect of prednisone and will disappear once you are off the drug.

 

5

Cobcur with Flip - it will get better as you reduce - but don't do it quickly as the underlining cause may still be there - you have only had PMR for less than a year.  There is no prize getting to zero in such a short time!

6

ncbi quote - Polymyalgia rheumatica (PMR) and exacerbated pulmonary fibrosis presented concurrently in a 69-year-old woman with a 5-year history of idiopathic interstitial pneumonia. The radiographic and histological examinations suggested usual interstitial pneumonia (UIP) as a more likely diagnosis. Corticosteroid therapy resulted in relief of the patient's muscle symptoms and improvement in the functional and radiographical signs of the pulmonary fibrosis. The final diagnosis was pulmonary fibrosis associated with PMR, because PMR is believed to be one of the causes contributing to interstitial lung diseases.

7

Unsure why you agree with flip that breathing will get better as prednisone is reduced. Particularly in light of your later post which indicates that corticosteroid treatment improved lung disfunction.

8

I couldn't guess as to how cause and effect are related here, but can we imagine how vasculitis might possibly cause fibrosis, in the lungs or elsewhere?

9

Under 'normal' conditions as you get to a lower dose it does improve - I can attest to that, and so does Flip and I would say many others. 

The other post is an association with PMR with UIP, 'exacerbated pulmonary fibrosis', it doesn’t mean that everyone will succumb to it.   Same as most don’t contract osteoporosis but steroids can bring it on.  Remerber we are all different and react to meds in different ways.

10

ANY shortness of breath should be investigated - it could be due to a myriad of things, some of which are serious. 

11

Thanks, Eileen. I agree. I did investigate mine. It came on with reduction in medrol and was immediately relieved by increasing medrol. As well I learned that shortness of breath accompanies PMR in some cases and also it is rational to assume that lungs as well as muscles are subject to autoimmune disease.

12

Poor muscle funtion will lead to shortness of breath - whatever you do will feel like running a marathon. Even just walking up the stairs was enough for me - but it is lack of oxygen supply to the muscles that is the trigger for being out of breath as the body shouts for more. There is no evidence I know of that lungs are affected in PMR. They ARE affected in some of the more serious but mercifully rarer autoimmune vasculitides such as what used to be called Wegeners vasculitis.

13

Thanks, Eileen. I have at least two references for ILD accompanying PMR as an autoimmune occurence. I'll did them up and post them.

14

This is partial quotes from

 http://my.clevelandclinic.org/health/diseases_conditions/hic_Pneumonia/hic-nonspecific-interstitial-pneumonia

"Nonspecific interstitial pneumonitis: Interstitial lung disease that's often present with autoimmune conditions (such as rheumatoid arthritis or scleroderma).

What are the symptoms of nonspecific interstitial pneumonia?

A person may have these symptoms:

a dry cough

shortness of breath, which may occur after effort or become worse over time

difficult or labored breathing

fatigue

No one is really sure what causes NSIP. Many researchers believe that it is an autoimmune disease, because of the similarities between NSIP and certain connective tissue diseases, such as systemic sclerosis.

Most patients with the cellular type of NSIP respond well to treatment with oral corticosteroids, such as prednisone." 

15

I read this too.... :-)

16

What it says is that PMR and pulmonary fibrosis were found CONCURRENTLY - it doesn't necessarily mean one caused the other even if that was what they decided.

However, this is from webmd/interstitial lung disease if you want to have a full read:

"Interstitial lung disease is a general category that includes many different lung conditions. All interstitial lung diseases affect the interstitium, a part of the lungs' anatomic structure.

The interstitium is a lace-like network of tissue that extends throughout both lungs. The interstitium provides support to the lungs' microscopic air sacs (alveoli). Tinyblood vessels travel through the interstitium, allowing gas exchange between bloodand the air in the lungs. Normally, the interstitium is so thin it can't be seen on chest X-rays or CT scans.

Types of Interstitial Lung Disease

All forms of interstitial lung disease cause thickening of the interstitium. The thickening can be due to inflammation, scarring, or extra fluid (edema). Some forms of interstitial lung disease are short-lived; others are chronic and irreversible.

Some of the types of interstitial lung disease include:

Interstitial pneumonia: Bacteria, viruses, or fungi may infect the interstitium of the lung. A bacterium called Mycoplasma pneumonia is the most common cause.

Idiopathic pulmonary fibrosis : A chronic, progressive form of fibrosis (scarring) of the interstitium. Its cause is unknown.

Nonspecific interstitial pneumonitis: Interstitial lung disease that's often present with autoimmune conditions (such as rheumatoid arthritis or scleroderma). ...

... Who is at risk from interstitial lung disease? Anyone can develop interstitial lung disease. Men and women of any age can be affected. Interstitial lung disease is more common in people with autoimmune disease, including lupus, rheumatoid arthritis, and scleroderma."

So it is an aspect of several autoimmune disorders not just PMR and probably reflects the way the label you get for your symptoms depends on the ones that are predominant and match a historical paper describing them. 

And the management? Corticosteroids. Azathioprine and methotrexate are also thought to be worth trying. Plus a lot of other far heavier-duty immunosuppressants if they don't work.

17

My dad is in a similar situation.  He is 72 and was diagnosed with PMR and GCA last August (after about 3 months of misdiagnosis).  This is a guy who's never been sick other than sinus infections and went from fine to not able to move overnight. 

After diagnosis, he started out at 60 mg because of the CGA and was tapering quickly.  By May he was down to 15, but started to experience vision issues, and they jacked it back up to 60 and have been yoyo'ing ever since.  He's now on leflunomide as well to help with the tapering.  After coming off the high of the initial treatment, he started to experience extreme exhaustion and shortness of breath upon even little exertion.  After lots of lung tests he is now waiting for his pulmonology apt at the end of July.  In the meantime at his rheumatology apt earlier this month the doc in passing mentioned that he has "a component of pulmonary fibrosis" but that' he'd have to talk to the pulmonologist about it. Really!  Drop that bomb and then say nothing else?  I'm flabergasted.   Dad doesn't know what that means, but I know what that means and I'm totally freaked out about it. 

I know it could be just a weird cooncidence in timing... but like you I have read the articles you refer to and I feel like there must be a connection between the PMR/CGA and PF. 

I would lo love any advice you have about getting back to normal, or close to normal, functioning.  Holistic approaches, food, etc.

Thanks in advance.

18

Alward, I am so sorry to hear of your dad's situation. These autoimmune diseases, if there really is such a thing, are still mysterious to the medics. Someone has suggested that the fact that Medrol or prednisone relieve so many symptoms leads the industry to NOT do a lot of research into autoimmune diseases. I suspect that may be correct.

Anything that I pass along in the forums is purely my opinion from googling a lot of medical publications. So be warned.

I am now basing my level of medication on nothing more than my opinion. I am now at 10mg medrol per day and have almost NO back pains. I have never had any of the GCA symptoms - thank God or someone or something. As well as being pain free I can exert myself at a very high level without shortness of breath. The only downside I'm experiencing to the medrol is that I get lots and lots of very dark patches on my arms and legs which I assume to be bruises.

My overall lifestyle is that I eat a very balanced diet (thanks to my wife) which is sparse in red meat. I am very active. I take no other medications. (Stopped taking statins a few months ago.)

I have been on 10mg long enough that I believe I can try dropping to 9mg which I will do very soon. If anything develops I will post what it is.

Again, I am so sympathetic to your dad's plight. And there are probably others who are dealing with his issues more than I. Hope you find some help.

19

He's a year out now and he's stuck at 30 mg.  Every time he goes lower, his eyes are affected. Of course the docs only try dropping him 10 at a time.  They've never tried, dropping it slower.  He's so bloated and swollen, he can hardly walk.  I'm so frustrated with the situation.

I definitely think the GCA makes this so much worse. 

20

Then you need new docs - to try to change a dose by 33% at time is merely asking for trouble. Top US experts said years ago that a 10% reduction was more than enough at one time.