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PMR led to big breathing problems

Posted , 8 users are following.

noninoni
noninoni

Hi,  Haven't logged in in awhile.   About 5 weeks ago  I suddenly began to have real problems breathing.  Walk across a room and I am out of breath. Walk back and I am really out of breath.  I went to emergency and the diagnosis they gave me was absurd, grade 1 diastolic heart dysfunction- absurd is not just my opinion but the opinion of my primary and my pulmonary doctor and everything I read.  Also note, my CRP was 2.9, super high.   So was it the bird breeders lung disease which has been stable for 10 years (everyone wants to blame that one), or heart disease?  Neither according to my wizz bang pulmonary doctor, the one who diagnosed the bird lung disease 10 years ago, it was "connective tissue disease", inflammation that went to the lungs, in other words, the PMR which that clueless rheumatologist had been so reluctant to diagnose. I wonder if I had been properly treated for PMR from the beginning, would I have this problem now?  Anyway I am having another round of high dose prednisone, tapering fairly quickly, and I am being put on oxygen since I met the criteria for that:  She walked me 50 feet down the hall, my oxygen sat went down to 88%, and she stopped me right there- low enough for oxygen.  I just hope they can get it under control--then I might not have to lug oxygen around the rest of my life.

By the way, I feel fine if I am sitting or lying down.  It is just walking.

      I must say I have often thought I should fly across the pond to the U.K. for this PMR thing. You seem to have a much better handle on the disease than we do here.  

0 likes, 6 replies

6 Replies

  • EileenH
    EileenH noninoni

    Posted

    CRP will rise with lung infections too so they shouldn't rule that out. But a sats of 88% after less than 20 yds walk is a bit dodgy!

    I won't suggest you keep on walking!

  • tavidu
    tavidu noninoni

    Posted

    I am so sorry to hear of your nreathing problems and do hope that they soon get it under control. Here in the U.K they (our doctors) are slowly realising that PMR does exist but I feel that at the moment it is us sufferers who are keeping a handle on it rather than the G.P's. After reading some of the discussions on this forum I still feel that I am one of the lucky ones with PMR as I am managing to avoid a lot of the side affects of pred. I do get very out of breath walking up hills etc but after 5 mins rest and back on the flat I can plod along slowly without much trouble. My main problem is trying to reduce preds and am currently on 15mg a day, I am now going to try dropping to 14mg a day and see if I flare again as I did last June simply by dropping 1mg. Anyway, good luck and I hope you soon get your breathing back to a more satisfactory level.
  • ray12929
    ray12929 noninoni

    Posted

    yeah hi i have been sufering dizziness and some breathing issues when I am tired and expecially when I am exercising to an extent that I have to stop doing things for about 15 seconds and then start again. Once I stop I am fine..if I continue I faint.

     

  • noninoni
    noninoni

    Posted

    It is now 2 weeks later and, after a hi dose prednisone treatment (40mg 4 days, 30 4 days, 20 4 days, now 10), my lung function has improved so much that I no longer require supplemental oxygen, although I still feel a bit short of breath sometimes.  My oxygen sats during a "hall walk"  2 weeks ago was 87%;  the lowest yesterday was 91%.  The good news is that I am no longer shackled to an oxygen machine, which was pretty horrid!

         So to me this really demonstrates that what I had was a flare due to PMR that was significantly under-treated because of our medical community's paranoia about prednisone side effects. And for once my top notch pulmonary doctor actually agrees with me!  But she does want me to go back to that rheumy and have a trial on methelprexate. 

  • noninoni
    noninoni

    Posted

    Also  the prednisone fast taper has left me exhausted.  I am back down to 10.  I have to take a nap once every 2 hours!!  Of course when I was on 40 mg, I couldn' t sleep!  Now I can't do anything but sleep. 

           Breathing problems are still there but not as bad as before.

  • teal60167
    teal60167 noninoni

    Posted

    Hello everyone with PMR,

    I've been diagnosed with the hideous PMR now since 2018. It has several symptoms that aren't listed in some of the regular journals or forums. I say that just FOR ME these are things that most do not recognize as related to PMR.

    Such as, Shortness of breath when doing any physical activity doesn't seem to be recognized by some professionals........IT IS REAL and here's how I know this to be true. I have had a couple of really bad bouts of not being able to breath deeply or seem to get enough air into me lungs. I get head aches, light headed, dizzy and can't even walk to the bathroom without running out of air. JUST went to my regular Doc thinking I had pneumonia, Covid or just severe FLUE. He came back after doing the Covid, and Flue tests and I am NEGATIVE on both. he could hear my wheezing and asked if I was still taking my Prednisone. Long story short here....He told me my Oxygen Level was 94% also did Lung X-rays and they are as CLEAR as they were 12yrs ago...side by side comparison showed no differences at all. That was pretty amazing since I smoke and he said some people never get issues...weird but cool at the same time.

    He has me on some breathing helps, inhalers, Antibiotics and will have a specialist look me over in a couple of months.

    I got dizzy just walking to the X-Ray machine, Took a few minutes to see straight and then again walking back to our car...............ANY OF THAT SOUND FAMILIAR?

    As I said earlier, I've had this since 2018 and gone thru a few relapses and ALL come on just a little different so it is pretty difficult to get ahead of an onset or relapse. One time it is my neck that starts kicking my behind. Next it will be excessive sleepiness, Another is feeling like a KING one day and like a FROG for 4 or 5 days. Another is all of a sudden I can NOT catch my breath even taking deep breaths....no rhyme or reason for that, It just hits me like a big slap in the face too.

    My hands will start feeling swollen...not actually but just sensation wise. NOW My NECK seems to be the most common indicator for me but that doesn't always show up as the first indicator. IT USED to be my Right KNEE was my indicator so that can CHANGE as this PMR progresses.

    Then there are times that I can do about anything I want and not have any side effects what-so-ever. No pain, no sore muscles, and feel like a 50-something again. I'm Only 70 and my mind feels young but the PMR kicks that all to kingdom come when IT wants to.

    I do have an Arthritis Doc that allows me to adjust as I need on my Prednisone Doses. I was reluctant to even start on the Prednisone in the first place but since I have used it to control my Episodes or Relapses and reduce the dose after it is under control he agrees with my approach. I know how severe the drug is and saw the effects on both my Uncle and Dad. When I KNOW I'm having an Episode or Relapse I jump my Dose up to as high as 20mg day and as SOON as the symptoms START to subside I reduce by 5mg per day for a few days....maybe 4 or 5 days and then reduce again until I get to that Magic 8mg per day in my case.

    This Difficulty Breathing ISSUE has hit me a couple of times pretty hard now and I can with all certainty tell you all that it IS 100% related to Our SHARED PMR. My lungs are clear and my oxygen levels are sitting and relaxed state are up in the 94% level. YET I still have Wheezing and Trouble getting enough AIR into my lungs....BTW, I've quit the Cigs a bit ago and still get these attacks.

    It is starting to subside a little now after about a week of this breathing issue. I've increased my prednisone up to 20mg per day now for 4 days and just dropped down to 15mg this morning.

    One bit of a non professional...Don't be so concerned with increasing your dose just because you are going down and feeling fine. THIS PMR does go into a somewhat remission laying dormant for a period of time but has a real nasty habit of resurfacing out of thin air with no predicable indicators. Even if you find like me a specific indicator IT CAN AND DOES CHANGE that too.

    Like I claimed in my opening...THIS IS A HIDEOUS REAL DISEASE THAT IS NO FUN AT ALL...BUMMER STUFF!!!

    I hope this helps anyone see there are different aspects to this PMR and does change how it hits you and others. I'm not ready to let someone tell me it is ANXIETY or some mental issue...that is just a COP-OUT and standard reply from those that are lazy, don't know enough or just don't care to dig deeper....I call them "WAIST OF TIMERS".

    Ditch the "WASTE OF TIMERS" and find someone that will do their Due diligence and HELP you.

    Those are JUST MY OPINIONS and experiences with this PMR crud...Best to all of you, and I mean it!

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