shortness of breath as related to PMR

Nearly 2 years ago I had an episode where suddenly, overnight, I was unable to walk comfortably up the slope into the village from where we live. I was totally out of breath and dizzy, I could just about manage on the flat by any slight slope was too much. I was investigated for heart problems - nothing. A dose of 15mg pred instead of the 5mg I was on at the time sorted it immediately - after I realised a few weeks later that the aching and stiff hips were reappearing and possibly this was a flare. It was the breathlessness problem that returned as I tried to reduce the pred dose and it was a few months before I got below 12mg as a result. Since then I have reduced steadily with no problems and was back to 5mg - until a few weeks ago when I had a similar experience when walking up stairs. I've gone back to 7mg and seem to be fine again. 

My own suspicion is that this might be a flare where the autoimmune disorder is affecting the blood flow in the chest arteries and so causing the breathlessness, there has been a question of whether this is a bit more than PMR, more in the GCA direction, before. But I've asked for referrals to the cardiologist (I have atrial fibrillation anyway) and the new top PMR expert rheumatologist who has recently taken over as regional head of rheumatology here. 

Lots of people with PMR/GCA have found they struggle with hills, even llittle ones. The suspected poorer supply of blood to the muscles (or lungs) would be enough to cause the breathlessness - just like after you have run for a bus or up the stairs even without PMR. I would love to know if the mitochondria, the powerhouses of the cells, are involved. That would contribute too.  And I do know there is an article about fatigue being a very early sign of a developing PMR - is there an overlap between fatigue and breathlessness as such? 

It is all a mystery - and to that you have to add that autoimmune disorders overlap a lot in terms of symptoms. The label you are given depends on the clinical presentation - so if you have bits of what are normally perceived as 2 different disorders they seem to get totally confused as to what you have!!!!!

Carol Ann, I have the same problem but mine developed long before PMR . I was exposed to fumes from a floor solvent used to prepare my late mom's home for sale. I was exposed only a few minutes and a week later I was viviting the Pulmonologist. The diagnosis: reactive airway disease which is not asthma and which asthma meds help little. However this got worse with PMR,steroids and low normal Vit D levels. With asthma steroids help immensely. The medical literature has a small case report on worsening breathlessness with steroids. Regarding reactive airway disease high normal blood D levels have actually abolished this problem in an interesting case report.

i increased my Vit D with oral supplements and a Vit D lamp. It has helped. Naturally I work with my pulmonary on this. I do use a bronchodilator-Ventolin and Symbicort but the higher dose of this inhaler dried my eyes severely. I tapered down to the lower dose ; my eyes got much better and my breathing was not worsened. 

This is a baffling mystery and, as Eileen suggests, multifaceted.

You can message me privately and I can send you the case reports.

I had a cold with mainly symptoms of cough and breathlessness. The symptoms were resistent for weeks. I thought it was a tough viral infection. 4-5 months later I had my first PMR symptoms.

Since then I had to Cranial-sacral-therapy sessions with work on my chest.  When deeper breathing was not possible, it always helped me. I felt looser after the treatment and I could breath way better.

Perhaps you could give it a try, if you have a therapist around where you live. 

I do have asthma as well as PMR and my excessive problem with breathing started after my PMR. But when I felt shortness of breath I tested my oxygen level and it was always normal during these episodes. Not only that but my rescue inhaler was not helping. I am a little better now but they put me in the hospital for 4 days under observation and it was pointless. In fact I was pretty frustrated because the whole time I was in the hospital I never once saw a pulmonologist. However they were all concerned about my heart because I had a slightly enlarged heart and I I told them that I had some chest pain but I knew it was from gas and if I could just burp I would be better. Well of course I said the words chest pain and even though my EKG was normal they went after it gong ho. So I saw a heart doctor every single day and they ran a couple of tests that they had already run a couple of years ago. My heart is just fine, they even say this slight enlargement is not a big deal. And as far as my breathing my GP thinks it's simply from anxiety. So I'm treating it as if it's an anxiety attack rather than a physical problem. But it is very frustrating.

Carol Ann, I don't know if breathing problems are is a symptom, but I do know I have the same problem - especially at night.  If I even try to sleep on my side I cannot breathe.  There is no asthma, only difficulty getting a breath. I have the same extreme limb weakness, too.  No relief, only daily worsening.  Having fought and won the battle with Behcet's thirty years ago, I'm not feeling so positive about this battle.  Before PMR, my lifestyle was very active at nearing 70.

My seizing onset of PMR was May of this year and the diagnosis was confirmed by a number of blood tests.  The doctor also did blood work for additional immune diseases.  Before diagnosis, I went through over a month of heart studies due to the pain in my chest, racing heart, high blood pressure (unusual for me), etc.  We realize now, all the problems were the onset of PMR.  I've been on 60 mg of pred. down to 30, just had a shot of 125 mg on Friday and am now in my  4th week of additional methotrexate, without much change.  I was told I will not be getting off the methotrexate.  My body was seized to the point of total immobility.  There were few things, including getting into bed, I could do for myself  - until the prednisone. Now, my body moves, but there is also a lot of pain that is full body.  The Rheumatologist will probably put me back at 60 mg. of pred. again, in Nov.  The side effects of the meds are not helping.  This is such uncharted territory.  It is encouraging to read that many on the list are at such reasonable doses of prednisone.  I'm not sure that is where I'm going to be for a while, but will remain hopeful.  Thank you, thank you for this list.  MariGrace 

 The PA I work with mentioned 'a flare.'  This confused me because the way I see it, I've not gotten out of the first flare, yet.  A flare in a flare?  This stuff is kicking me.